**Calling all moms of monoamniotic twins!**

[SIZE=12pt]We are trying to put together a thread for the moms-to-be of twins to use as a source of information - this thread will eventually be posted as a sticky in the Expecting forum.

We'd like the moms of Twinstuff that had monoamniotic twins to please share any information that you think would be useful. Also, if you know of any sites that were particularly helpful to you, please post those as well.

Thank you very much! :give_rose:
[/SIZE]


[SIZE=12pt]Many thanks to ivfbound078 for this terrific idea. Thank you!! [/SIZE]

 

Hello!!

Im a mom to be of Momos BUT I can tell you the site

www.monoamniotic.org is a GREAT source for info, Though you cant join due to some error, so you can read and see what others have gone through but cant ask questions!

Good luck getting this thread together, I personally cant wait to read it!!

 

Here is my story that I posted on monoamniotic.org (great site with awesome support!!!!!):

After trying to get pregnant for only two months, my husband and I found out we were pregnant in October of 2007. I got my first ultrasound at 12 weeks. We told the ultrasound tech that we just wanted to hear and see a healthy heartbeat. She said "how about two". We were speechless and just stared at the screen. I did not realize that the next words that she said would change my whole pregnancy and life. She said "it looks like they may be in the same sac". Of course, I simply thought that meant identical. She explained the whole monochorionic, monoamniotic thing, but didn't seem real concerned. After the ultrasound we had to talk to the Dr. The appt was about to be over and he hadn't mentioned the babies being monoamniotic. I asked him about it and he seemed upset that the ultrasound tech had told us. He said it was "too early to tell" and we would worry about it later. So, I go home and research and find this site (monoamntiotic.org) and am floored. We had another appointment at 16 weeks, I asked him again about monoamniotic, being inpatient, needing to see a specialist, etc and was blown off. Obviously, I was being too nice and patient. At 19 weeks we had the ultrasound to see the sexes and they still didn't see a membrane and still no plans to do anything but see me every two weeks. At 20 weeks I changed Drs, this was the best decision that God has ever led me to. My new Dr. was AWESOME. Even though he had never dealt with momos before, he knew the risks and treated me like I knew what I was talking about. He agreed to call UAB hospital and see what they said about inpatient monitoring and see me in two weeks. Since I would already be 22, almost 23 weeks before the next appointment I made myself an appointment with a specialist at UAB. When I went back to my OB the next week an told him I already made myself a specialist appointment, he was excited. So, I went to the MFM at UAB the next week (24 weeks). He did not find a membrane and said that UAB's policy (he had to call someone to find out, so he obviously had never not found a membrane before) was to monitor outpatient every other day and he would see me again in 4 week (28 weeks pregnant). WHAT!!! So, I go home and fax him all the medical studies from this site (monoamniotic.org) (this was Friday). On Monday morning he called me and told me to come back and he would do the amnio-dye test and if it came back that there was no membrane then I could go inpatient at 28 weeks. So I go see him (25 weeks) for the dye test and the ultrasound showed that they were obviously monoamniotic and the cords were quite twisted so we didn't have to do the test. I put in writing telling him that I wanted to be inpatient at 26 weeks, not 28. So, the following Monday at 26 weeks I go into the hospital to be on continuous monitoring (1 shower and 3 walks per day) and get my steriod shots. The whole stay now seems so short, the nursing staff was great. I learned how to keep the babies on the monitor and how to read the monitors. The whole stay was uneventful (except my blood pressure shot up at 32 weeks) We delivered at 34 weeks 3 days. They were both born at 7:54 on May 7, 2008; 40 seconds apart. Cooper was first, he weighed 4 lbs 8 oz and was 17 3/4 inches long and Clay weighed 4 lbs 11 oz and was 17 1/4 inches long. Their cords were very twisted and knotted. Even though they both scored 8 and 8 on the Apgar they both had to be ventilated. I saw them for a couple seconds and then they were taken to another hospital's NICU. I was able to get out and see them two days later. They were off of the ventilator by the time I got out of the hospital. They stayed in the NICU 2 uneventful weeks. They are now beautiful, healthy two month olds that weigh 9 lbs. (they actually weight 10 lbs now)



Here are the umbilical cord pics (*warning: a little bloody*):
http://www2.snapfish.com/share/p=451012157...c=SYE/otsi=SALB


TwinLove-

This is such a great idea, thank you. Let me know if there is more information that you would like to have. Do you want the medical studies I referred to posted?


Christina- Does monoamniotic.org know about this problem? I will message the moderators and find out what is going on.

 

Those are INCREDIBLE photos!!!!!!!!!!!!!! They are just gorgeous too! Love it and thanks for your story! Yes, by all means, post ANYTHING that can help the new Mom's of MoMo's.. I'm sure it would be GREATLY appreciated.

Congratulations to all of you!!

 

Monoamniotic.org is by far the best site for momo moms. Everyone is experiencing the same thing.

I have enclosed pictures of the cords, it's a bit bloody, just so you know. Also under my signature is my caring bridge site if you want to read in detail what I went through while inpatient. Please let me know if you need anything else. I'll try to keep it as short as possible.

Here's my story. I gave birth to monoamniotic girls on March 3rd, 2008.

I had a routine U/S when I was 9 weeks pregnant and found out I was having twins. My husband & I were shocked but excited at the same time. I was referred to Maternal Fetal Medicine at 10 weeks because of the twin pregnancy and for the 1st trimester screeing. That's when we heard "monoamniotic", "high-risk" and "rare". I had no idea what it meant to have 2 babies in the same sac with no membrane. We were told that 50% of monoamniotic pregnancies are lost before 24 weeks. We were then told to come back in 2 weeks to look again for the membrane, which they did at 12 weeks, 14 weeks and confirming no membrane at 16 weeks. At the 14 week appointment we were asked if we wanted to "terminate" the pregnancy. Can you imagine? We never went to that doctor again (there are 3 in the group). We were devasted. They told us point blank that every 2 weeks we would come in to see if the babies were still alive. My cords were already tangled at 14 weeks. The goal was to make it to 24 weeks and go inpatient until a planned c-section at 32 weeks. Anyway, I was referred to monoamniotic.org by someone on this site and was happy to see so many great stories. I took in all the advice with open eyes, never feeling like I was getting false hope. I made it to 24 weeks and decided to do out patient monitoring for 2 weeks because I already have 2 small children that I was trying to stretch out having to leave them and DH. So I went in at 26 weeks, monitored 3-4 times a day for an hour each time. The babies did great, no heart rate dips and I made it to 32 weeks 4 days delivering by c-section my beautiful miracle babies Teagan & Taryn. I have to say the whole experience changed my life.

http://i295.photobucket.com/albums/mm155/I...os/100_0022.jpg

http://i295.photobucket.com/albums/mm155/I...os/100_0020.jpg

 

My name is Jocasta and I live in Wellington, New Zealand.

I was diagnosed with monoamniotic twins at 8 weeks. I don’t remember being told directly that the babies were monoamniotic and after the shock of hearing twins I can’t remember exactly what was said but once I got home and did an internet search on identical twins I was convinced that my babies were in the same sack. My GP referred me directly to the High Risk Team at Wellington Hospital.

My first appointment with the High Risk team was emotionally really hard. After having an ultrasound and seeing my babies swimming around and then going straight on to talk about viability was to much for me and I ended up crying through most of the meeting. From then on I prepared myself for the heartbreak of these fortnightly appointments but they were never as difficult as that first one. My specialist told me that I was the 4th mo-mo mum in the previous 10 years that Wellington Hospital had seen. I pretty much lost hope at this appointment that a membrane was going to be found. My specialist said that mono twins are often misdiagnosed but I wasn’t going to be one of those and that he was absolutely certain of that.

From there I had fortnightly appointments with an ultrasound completed at each appointment. Growth and Dopplers were done at every scan. Until I felt the babies move strongly the fortnight would pass slowly.

The time before admission is probably one of the most difficult in my life. The stress of worrying about what was happening with the babies and how being away was going to effect my 2 year old kept me up crying many nights. For a long time I felt quite angry that my first pregnancy was physically very hard on me and that this one was emotionally difficult. I still do long to have a happy pregnancy that lots of woman have.

I was admitted as a in-patient at 26 weeks. I had alot of issues with the midwives on the ward who didn't understand why I was there and I was challenged rudely often in the first few weeks of my stay. I didn't feel it was my place to educate them so I complained and complained though the house surgeons who did some education. It did help but still there was misunderstanding. It was really stressful and upsetting especially when all I wanted to do was be at home with all my girls.

My schedule was a CTG once a shift or 3x day with a doppler ultrasound once a week and a growth check every fortnight. I would see the house surgeon and register once a day and see my specialist once a week during the major ward round. I had steroid shots at 26, 28 and 30 weeks.

Lucky for us the babies had no signs of distress so we made it to our maximum date of delivery. The girls were 32+2 weeks when they were delivered on the 26th July 2007. On our delivery day there were many emergencies so I ended up waiting until 2pm before the c-section was performed. It all went well and we ended up being a rare case with absolutely no entanglement at all.

The girls came out screaming and were quickly stabilized by the neonatal team. They were in the room with us for a couple of minutes before being taken to neonates. I did get a quick look at them as they were taken away. In recovery I was bleeding too much to be transferred to the ward by wheelchair so was unable to be taken to see my girls. This was extremely distressing and I did end up trying to get into a wheelchair in the ward. Sadly I wasn’t able to without passing out so I ended up not seeing the girls until 8am the next morning. I realized later that the girls weren’t as stable as everyone hoped they would be. Both had RDS and it took them a week to stablise and come off CPAP.

The Neonatal journey was a lot harder than I realised it would be however. Both girls had jaundice and were put under lights. Food tolerance was an issue and while Juliette’s resolved Madeleine ended up having an operation for a malrotation (twisted bowel) at three weeks – this was not related to prematurity but a birth defect.

Wellington Hospital’s Neonatal unit was overcrowded when the girls were delivered and we were transferred to the feeders and growers room after a couple of weeks. The girls were still being monitored and really should have been in the higher care area but there just wasn’t any room. What it meant for us was that we sat and watched babies go home and then more babies go home and then more babies go home. It did feel like it was never going to be us.

Of course they did come home - Juliette first after 6 weeks and Madeleine was a little later at around 7 weeks.

 

I became pregnant right off the bat of trying. I went for an U/S around 5-6 weeks and everything looked great. One healthy baby was seen with a nice heartbeat. Everything was going smoothly and I went in for my routine U/S around 21 weeks. It was then discovered that I was carrying twins. No membrane was found, but nobody really said much, except that I needed to get a higher resolution U/S to look for a membrane and that it was likely nothing to worry about. I went in for that U/S and still no membrane was found. The perinatologist actually suggested to think about reducing to 1 baby. That was not an option, and to be honest DH & I were still not completely understanding the whole thing. I went for another check up at my regular OB and he explained it like this "if you went into a closet with another person and both of you started moving around and swinging jump ropes, odds are those ropes will end up tangled". That made sense. He said most doctors deliver between 28-34 weeks. THAT scared me! I went home in tears. DH then took matters into his own hands and called CHOP looking for some dr who might have had more experience, as my OB had seen 4-5 cases in his 20 years. We stumbled upon a genetic counselor who made an appt for us to meet with 2 top Maternal Fetal surgeons. Little did we know that DH's luck had hit pay dirt. We went to meet with Dr. Timothy Crobleholme and Dr. Mark Johnson. They said they could not help us, but a colleague of theirs in NY had handled 13 cases with 100% positive outcome. He called him on the spot (Friday around 6pm) and talked to him. He hung up and told me to pack my bags, I was moving to NY on Monday. The dr himself, then called my insurance company and made it clear to them what I was doing and why. This way I would not have a problem, and I never did. I was admitted to Columbia Presbyterian/Babies Hospital of NY on 9/11/00 (26 weeks). They did twice daily NST's for an hour or more at a time. If they saw anything they did not like I was sent up to L&D for continuous monitoring until they decided that I either needed an emergency delivery, or I was out of the woods and safe to go back to twice daily NST's. I ended up going into PTL (1 day after my Pop Pop died, and I couldn't go to his funeral) at 30 weeks 6 days. I ended up delivering at 31 days exactly, as they could not stop my labor. During delivery, DH saw the cords, and there was a true know and about 6" of twist on top of that. We were very lucky. The girls spent 3 1/2 weeks in the NICU and are now healthy, happy, thriving 7 (soon to be 8!) year olds!

I too also believe monoamniotic.org is an excellent site for resources and inspiration.

 

I forgot to mention the Heyborne study, here's a link.


http://www.momo-babies-uk.com/heybornestudy.htm

 

That's amazing Lisa. I never saw that study before. Then again, I am about almost 8 years out from having my momo's, lol.

 

I know, you have the oldest MoMo twins I know!!!! And you ofcourse were the first to reach out to me on this site, which I will always be grateful for.

 

I also have monoamniotic twins! I found out I was pregnant in March 2007. At my first doctor's appointment, we learned we were having twins. The doctor only saw one yolk sac which he said could be an indicator of momo's. He was familiar with momo's because one of the sono technicians in his office had momo's 6 years earlier (he was not her OB though). He scheduled me to come in for appointments every 2 weeks in hopes that they could find a membrane - never did. We immediately began preparing (mentally) for me to go inpatient at 24 weeks and for me to begin seeing a perinatogist once I was admitted to the hospital. Once admitted, I was monitored 3 times a day for 10 minutes at a time in the beginning to 2 hours at a time at the end. For 2 days it was 24 hour monitoring as my ultrasound showed some tightening in the cords during the middle of my stay. I received ultrasounds daily from 1 of 2 of my perinatologists. My OB also checked on me daily. At 30w5d during a monitoring session baby B's heartrate kept dropping. My OB was there within 20 minutes and we had an emergency C-section within an hour.

We are a success story! My girls were 3 lbs. 10 oz. and 3 lbs. 11 oz. Their cords were knotted and braided looking. They were in the NICU for 27 days. They had no health issues other than needing to gain weight and get over some jaundice! Now they are absolutely perfect and you would never know they were premature. My husband and I are so blessed!

I also LIVED on www.monoamniotic.org at the hospital reading success stories to try to keep a positive attitude. I hope these stories can give other moms pregnant with momo's some hope that things can turn out just fine! Some of the things I found on the internet were very depressing so I tried to not read them.

Melissa

 

Ok here is my story. I couldn't even go to a doctor until I was 26 weeks pregnant, insurance problems, anyway that is when I found out that I was pregnant with twins. the doctor mentioned something about there not being a membrane but I didn't know what that meant. My OB sent me to a specialist where he confirmed that they were monoamniotic and told the dreaded 50% chance of survival speech. Here I am now at 28 weeks and two days after I met with the specialist I went back to my OB and then turned around and went straight to the hospital to be admitted for hospitalized bed rest. Now where I live did not a level 3 NICU at the time so I was transferred to a hospital that was over 2 hours away from my home, family, friends, and my 3 year old son. I was to stay in this hospital until my girls were delivered at 32 weeks, that was the plan at least. I was on constant monitoring and was only allowed up out of bed to go to the bathroom and for a 15 min shower. However at 31 weeks at 3:00 in the afternoon, 1 week and 2 days before my scheduled c-section, Baby B (Rebecca) went into distress. Her heart rate jumped from the 160's and 170's to the 190's and 200's and stayed there for 30 min. Once the doctor's got her heart rate to calm down they told me that if anything else went wrong they were going to go ahead and deliver me. Sure enough at about 7:00 pm I started having contrations and dialating. I had to wait a little over an hour b/c there was already a surgery in progress. By 9:00 pm I was in surgery by myself b/c my DH had a late start b/c of having to wait for a babysitter and then getting caught in traffic. The girls were born at 9:40 pm and 9:41 pm. Baby A Lorelei Roeshelle was 2 lbs 15 oz and Baby B Rebecca Anne was 2 lbs 11 oz. They were put on cpaps and placed under the bili lights. My DH missed the delivery by 20 min but he was there when I was brought out of surgery. I was not allowed to see my girls for myself (DH brought me pictures) until 1:00 pm the next day. They were born on a Wednesday and I was released on Saturday. By the end of the weekend they were off the CPAP's and breathing on their own. They spent 4 weeks and 5 days in the NICU.

Here is a pic of their cords.
http://i7.photobucket.com/albums/y280/latb...rasoundPics.jpg

Here are pics of how small they were when they were born.
http://i7.photobucket.com/albums/y280/latb...Hospital012.jpg
http://i7.photobucket.com/albums/y280/latb...Hospital007.jpg

 

Here's my momo story: (Sorry it's so long!)

A few months before our daughter’s first birthday, my husband and I decided that we were ready for another baby. We were excited and tried right away. I got pregnant the first try -only to have a miscarriage and D&C 8 weeks later. We were heart broken, but determined to try again. Just a few months later I got pregnant again. Unfortunately, this one ended the same as the previous pregnancy -miscarriage and D&C at 8 weeks. This time we were not only heartbroken but devastated and angry as well. Due to some minor complications, we were told to wait a while before trying again. Finally, six months later I was pregnant again. We had an early ultrasound because of the miscarriages and at 7 weeks saw one, strong heartbeat. We were thrilled and relieved. When I was pregnant with our older daughter I had wanted twins so badly, and this time around we were hoping that it wasn’t twins. Of course, at our next ultrasound we were shocked to see TWO heartbeats! After the initial shock wore off -we were thrilled. I prayed that were fraternal -I knew that identical twins could lead to a more complicated pregnancy and after two losses, I really wanted an uneventful pregnancy. A week after we found out we were having twins, I passed a huge blood clot and we feared the worst. We knew in our hearts that we had lost our babies...again. We went in for an ultrasound the next morning to confirm. Again, we were shocked to see two heartbeats on the machine! We were thrilled, to say the least. We were sent to my MFM at that point and found out soon after that the twins were not only identical, but monoamniotic. Again, we left the ultrasound in shock. Luckily, my Dr. recommended the monoamniotic website and told me I would be able to find lots of support, info, and hope there -boy, was he right! I was excited about the babies...yet extremely worried about losing them. I was also dreading being in the hospital for so long away from my sweet little Penelope and husband. I knew it was the right thing for us to do and knew we’d never regret me going inpatient. I went in at 26 weeks and was on 24/7 monitoring. We had originally planned to deliver at 34 weeks, but after a few minor scares here and there, we decided to make it 32 weeks. On November 30th, at 30 weeks, Charlotte Ivy and Lola Eve had their own plan. At 12:15 am Baby A’s heartbeat fell to 60 and stayed for 3 minutes. They were delivered shortly thereafter through emergency c-section- both weighing a little over 3 ½ pounds. Charlotte’s cord was wrapped around Lola’s neck twice and they had two knots in their cords. We were so thankful we delivered when we did!! The first day was amazing -they had no complications and were on room air. We were ecstatic! The following day they both took a nose dive -both were on vents, both had PDA’s, and other preemie issues. The girls did great – they had a few ups and downs during their 8 weeks in the NICU, but nothing too serious or life threatening. They are 19 months old now and doing wonderfully -they are thriving well. They are very happy and healthy little girls...we are ALL happy now! I’m so grateful to the amazing and dedicated staff at the hospital who took care of me and my girls, and to all the wonderful momo parents at monoamniotic.org who helped us through such an emotional roller coaster of a ride. We feel very blessed with our family and our little miracle girls!




Katherine

 

monoamniotic.org should now be acepting new members!!!

:yahoo:

 

QUOTE(sjohnson813 @ Jul 29 2008, 11:33 AM) [snapback]902616[/snapback]
Christina- Does monoamniotic.org know about this problem? I will message the moderators and find out what is going on.



I sent them 4 emails letting them know... But the problem has been fixed, and I have since joined! ~THANKS A BUNCH FOR LETTING THEM KNOW!!!

 

Ok, here's our story...
My husband and I had been trying for almost a year to get pregnant and we were so excited when it finally happened. I went to my first appointment when I was somewhere around 10 weeks along and found out we were having twins! Immediately my doctor sent me to have a better ultrasound performed because she thought they might be in the same sac. I had absolutely no clue what that meant at the time. Once it was determined that they were monoamniotic I was referred to a specialist who of course told me all the scary statistics and got me pretty scared. However, overall I had a pretty good pregnancy. It did get exhausting having to constantly explain to people that my twins were not like "so and so's" twins. I had ultrasounds done about every week and they would check the blood flow through the cords. I went inpatient at 28 weeks and we planned to deliver at 32 weeks. I was on 24/7 monitoring and at 29 weeks and 2 days, the nurses started to detect some problems with one of the babies. After finding the babies with an ultrasound and a little more monitoring my ob made the decision to deliver the babies. In less than 2 hours from the time the nurses first woke me up Hailey and Hannah were safely delivered into the world! Hailey weighed 2 lb 8 oz and Hannah 2 lb 10 oz. Because we had to do the c section so fast we had to time to wait for a spinal or anything like that. Instead they had to put me under. So sadly, I missed getting to see my daughters delivered as did my husband because he couldn't make it to the hospital in time. We have no pictures of the delivery or their cords because of the rush of everything. The girls were immediately put on ventilators and given surfactant. They each received a few doses and also a few transfusions. When they were five days old, our neonatologist decided to transfer them to University of Alabama Birmingham because they had better capabilities than our small town hospital. Hailey did not have too many major problems, just being little really. Hannah on the other hand had to be sedated once or twice because she was fighting the ventilator, she had PDA, a grade 3 brain bleed, and VSD. She also stayed on CPAP for a long time. Looking at them now, you would never know that she had so much more trouble than her sister! There is still a slight size difference but she is catching up! Since we were 2 hours from home, I stayed at the Ronald McDonald house while Hailey and Hannah were in the NICU. Hailey stayed for 54 days, and Hannah for 60. Hannah came home one day before their 2 month birthday, which was much sooner than we ever expected! I would highly recommend UAB to anyone who is in that area. Our girls are 6 months old now and weigh close to 15 pounds each. The experience was the hardest thing I have ever done and looking back I wonder how in the world we would have done it without God guiding us along the way. We learned so much from this and have really grown in faith and closer to each other.

I would also greatly recommend monoamniotic.org, it is a wonderful support site. I made the mistake of trying to find info on the net and read something outdated that said momos only had a 50% survival rate and cried the whole afternoon... I later found out the rates are much better now.

 

Wow thanks for sharing. Those are all such amazing stories!!

 

My story. I found out I was having twins at an ultrasound at 23 weeks pregnant. My small town doctor could not find a membrane. He sent me to a specialist at 25 weeks. The specialist admitted me to the hospital the next day with the momo twin diagnosis. I have been in the hospital since then. I get monitored 3 times a day for an hour (min.), I have an ultrasound every other week, I do have walking privileges, and swimming (or I should say floating) privileges. I have made it to 31 weeks and 2 days pregnant. I have frequent d cell on my monitoring, a couple of them they were ready to do an emergency c-section and they put the IV in and the babies perked right back up. I’m at a hospital that has 10 doctors rotating and each doctor has his/her own opinion on when to deliver. Some say on day 32 weeks and some say let’s push it to 34 weeks and possibly 35 weeks. I am up in the air of when I do want to deliver. I want the babies to be in good health to not have to stay in the NICU too long. I live 3 hours away from the hospital I’m in, but I want to deliver them when I know it’s safe and not too late.

 

My experience while pregnant with Monoamniotic Twins
By Tanya Kuiack From Ontario Canada
My story is long..i'm sorry. My story is told as it happened., i'm honest and upfront with my experience and its not my intention to frighten anyone..My experience is not normal or at least i hope not in most cases. I just want everyone to know they need to find the right doctor and if you can't that you are strong enough to get through it and do what is best for your babies. I have two healthy twin boys and i don't regret all the fighting i did to keep them alive. Never give up hope..you are stronger then you think you are.

My 3rd pregnancy was not the everyday run of the mill pregnancy. I was having twins. And to top that off Monoamniotic Twins. Pregnancy itself can be very challenging, so when I found out at 4 ½ months pregnant that I was having twins and it was the second most high risk pregnancy a women can have, you can only imagine how I must have felt.

This pregnancy alone came with a lot of stress. It would take a toll on my mind, body and soul. Let me start by telling you a little about myself and my background. I was 34 years (today i am 36) old and my husband and I were trying to conceive a second child. We had had a miscarriage in September 2005. I was only 9 1/2 weeks pregnant at the time and was bleeding a lot.
It came to be that the baby had some abnormality. I was scared and not sure what was going on.
I was seeing a midwife at the time in hopes of getting better care then I did the first time around with my first child. The midwife referred me to an obgyn (who I liked very much). She was working out of St Josephs of London, Ontario. I had gone to the emergency room worried about the bleeding and they had indicated all was fine. However, a few days after experienced some pain, discomfort and dizziness and that following Monday I was told they could not find a heart beat.
I was told it was not 100% sure a miscarriage but to keep in mind that there was a good chance the baby had past away. I had some new symptoms that appeared 2 days later and my follow up appt was not for 4-5 days so went to my family doctor. When she found out I was pregnant and seeing a midwife she became very mean and condescending.
She actually stated "what do you want me to do? Paint you a bigger picture? You obviously had a miscarriage." Now, it was not confirmed at the time that I had had a miscarriage yet
I was told they couldn’t’ find a heart beat and that I didn’t’ have to loose all hope at this point.
This was the reason I was having a follow up the following week. I thought my doctor could see me and tell me what was going on with the new symptoms I had and of course was very scared. I expressed my dislike of her choice of words and never went to her again. This was not the first time she had been this way. This in mind, doctors now a days are few and far between and with today’s society you take what you can get and hope for the best. She shortly after left her practice and I sent a letter explaining how disappointed I was in her care. We are human beings with families and feelings and our health is extremely important. I never formed a complaint. Sometimes I wonder if I should have. I did end up loosing the baby and passing the child almost 2 weeks later.

My husband and I started trying to conceive again 4 months later.6 months later we were pregnant. We were obviously scared. After having a miscarriage you really have been robbed of enjoying the pregnancy fully because you are realistically aware of the possibilities. I did not have doctor at this point of course, so my father referred me to his doctor. I accepted on the terms agreed upon when meeting with this doctor that he would refer me at 3 months to the obgyn that I saw when I had my miscarriage. Given the issues I had with the last pregnancy and the abnormalities and my age of 34 I felt seeing an OBGYN was very important. I also expressed my feelings on listening to the heart beat after 8 weeks and the screening test that I wanted done do to my age. Other factors such as: I’m a twin, my uncles a twin, and my grandmothers sister had twins made it even more important to me to be seen by a specialist. It was certainly possible I would have twins but of course you never think it would happen to you. The doctor was aware of my history and he even knew my family. He measured my stomach on two occasions and stated my stomach size did not indicate the possibilities of having twins. I carried very small for my first child as well.


The screening was never booked. No matter how many times I brought it up, the heart was not listened to even after 12 weeks of gestation and I was really getting worried. He would not schedule an ultrasound either.
I was getting big fast and was having some severe discomfort around my waist and back which were not being addressed my doctor. Nor would he refer me to the obgyn as previously discussed. Something was wrong. I was not scheduled for an ultrasound either in which I was begging for at this point of 3 months.
I called the hospitals and spoke to the receptionist of the OB I wanted to be referred to and the long story of it was if it weren't for her and my insistence I would never had seen an ob until after 30 weeks and I would never have had the screening test or the ultrasound that lead to me finding out I was having twins and not the normal kind of twins.
I found out I was having twins when I was 4 1/2 months pregnant. I had the second most high risk kind of pregnancy out there. Right up there with conjoined twins.
There were many risks such as cord entanglement, cord compression and the known fact that these kinds of twins are extremely high risk. It was too late to have the screening done for downs thanks to the neglect of my family practitioner and I was not willing to have an amnio to further the risk of miscarrying twins.

Our journey of having multiples began. On august 22 we went to radiology and met with a fetal medicine doctor who gave us very little hope that these babies would survive.
One baby was 25% smaller then the other and that was a huge concern to this doctor. We were told at 25 weeks of gestation baby b weighed less and that increased both their chances of death.
My husband and I did not believe that. I was only 3 lbs when I was born and my sister was 5lb so
Seeing smaller baby didn’t concern me. They also stated there was no way to find out why he was so much smaller. I figured why worry about the babies weight if they can’t even tell me why he is smaller. I had enough to worry about already. Baby B on Aug 11 was 450 grams and baby A was 600 grams. And on august 22 baby B was 533 grams and baby A was 759 grams
They based our babies survival and statistics on a single baby and cut the statistics in half. This was inaccurate of course however that was all they had to give us given they had very little information on these kind of twins in this circumstances. They based all their conclusions on that.
They stated we were really only 23 weeks gestations given the size of the little one. They wanted us to make a decision not to revive them if they came earlier then “they†wanted them. And again this decision was based on unrealistic statistics. I had to do so much research myself which in itself was extremely stressful. You usually would find out more then you may want to know. I found a website full of monoamniotic parents who had been there and experienced it all and more. This became a fountain of information and gave me the opportunity to receive this information in a supportive manner.

I was told point blank by the fetal medicine doctor that these families are not people I should be listening to. This of course made no sense to me since this doctor admitted to knowing so little about this kind of pregnancy and was clearly set back that I knew so much about it then her and even stated that to me. She still wanted me to make a decision right then and there not to revive the twins if I went into labor before 28 weeks. They would not even speak of any circumstances after 28 weeks because they felt it unlikely we would make it that far.
After talking to families who had gone through via the mono site my husband and I
We were told to read the Heyburn study. After reading this we decided that we would wait until 27weeks before we wanted to electively be admitted to the hospital for monitoring. Monitoring in Canada can not be 24 /7 as it is in the United States. After my research we decided that we wanted monitoring least 3 times a day. I discussed this with my OB and she agreed.

So on Sept 5 2005 I was admitted to the hospital. Not knowing at the time this released me from regular visits from my doctor and left my babies lives in the hands of the on duty resident and someone who did not know much about mono twins. I was told I would have 2 nst (non stress tests) a day (checking heart rates) and an ultrasound each morning (BBP). My first nurse told me there was no real risk in my pregnancy (this was the first night I was in the hospital) and she felt there was no reason for the care I was explaining I was to get. She acted like I knew nothing about my type of pregnancy and treated me like I was naive. This was corrected the following morning by speaking to the person who worked as a liaison between the doctors and the nurses. It was clear from day one this would be an exhausting and emotionally challenging ride.

On Sept 9th I was having a hard time breathing and having heart palpitations that seemed unusual to me. I was told by the nurses it was normal and it was left at that. I was persistent and told the doctor on rounds the next day as that was the only other time I would be speaking to someone who would maybe take me seriously. The doctor had me on an ekg machine within minutes. I was told it was fine and advised to keep tabs on it and was apologized for not being listened to when I first mentioned the issue 24 hrs prior. On Sept 10 I was hooked up to the nst test and the nurse left the room. Leaving me alone for the hour. I knew little about these tests just yet however knew that I should not have been left alone. My babies were still very small and hard to find on the monitor and there were many complaints in my presents by nurses about why this kind of monitoring was being done on me anyway as they stressed their frustration on doing them. This I found very unprofessional and irritating not to mention insensitive to me the patient. I explained to a resident I was left alone and I was told that would not happen again and should never have happened in the first place. Sept 11 both babies failed their nst tests so I had an ultrasound several hours later to find out if the babies were okay. On Sept 12 the nurse could not find the babies heart beats because the babies were overlapping each other. She complained about it to the doctor rounding (in my presences) and the doctor immediately changed the orders of my monitor and severely lowered the time in which I was to be monitored. I spoke up immediately to the doctor expressing my disagreements and I was completely ignored and disregarded... it was understandable to me that there would be days that we may have a hard time finding both heart beats but that was no reason to lessen the amount of time I was to be monitored. Sept 13 the fetal medicine doctor came to see me and her first comment to me pertained to her surprise I had made it this far. This was not very encouraging. I expressed to her my feelings on the monitoring and how it had been lessened. She to disregarded my concerns and would not discuss it further with me. They felt if the babies were to die it would be unlikely we would catch it so therefore the amount of time to be monitored was not of concern. I was wondering why I had been admitted to the hospital at this time if they felt monitoring was not helpful or preventful as they were making it sound to me. I was so frustrated. I felt I was not being taken seriously and being admitted to the hospital was more to humor me then save my babies lives. The only positive thing was that both babies were growing. Baby B still behind in growth. on Sept 17th two nurses were doing my nst and kept stopping and starting it over because as they were speaking aloud to each other they didn't want the resident to see the strip showing so many decels when they know it was just lost signals. (Most nurses would just do the nst and write on the strip where the marked decels were that it was just lost signal) I felt this was again unprofessional and the test should not be altered. On Sept 18 a doctor came to meet me explaining he would be doing rounds that week. He came alone which was unusual, but nice. We got to know me and we talked about my circumstances. He was a great listener and was open to my needs and wants and concerns. Sept 20th...I was supposed to have Doppler’s done however it was not ordered in radiology. I convinced them to do it as there was no direct person on antenatal that I could have spoken to have that changed since I was already in radiology for ultrasound. On Sept 21 the kind doctor I met on the 18th put me back on the monitoring that I originally had at my request. I was told now that I was 29 weeks we could start talking about the c section date. It was mandatory for the safety of the twins. On Sept 25 baby A's heartbeat was skipping a beat. At this point I wanted Doppler’s every day and spoke to the liaison about it. She had the ordered changed to have this done. That was the probably the easiest request I had since my admittance.

On the 26 I was told by a rounding doctor that since once of the babies were not passing the BBP test (the practicing breathing portion of it) that with increased discharge and the breathing issue that it could be signs of early labor and that I should keep tabs on it and if I have anymore symptoms I would need to speak up. My cervix was checked it was a fingertip open. Then I was having tightening and after supper I was then 1 cm dilated. I was monitored until 3 am and sent back to my room since my cervix did not continue to dilate. On Sept 27.the babies weights were guessed to be 3.11 and 2.8. A date of Oct 10th was set for c section.

Two weeks before I was told that someone from NICU would come to discuss the steroids and surfactant so as I could make a knowledgeable decision on which I wanted to do if I wanted. No one came. I spoke to the doctor on rounds and she said she would call them herself. But no one came. My ob said she would contact them herself as well as I need to speak with them. No one came. I was told twice by nurses that the NICU was notified and was to come and speak to me. No one came. The last request was on Sept 26 but still no one came. On the 28th the liaison asked me if someone came (as this was approaching 2 weeks of requests) when she found out no one had she notified them again. No one came. Also on the 28th I was experiencing very sharp pains in my right rib. I mentioned it to the nurse first thing in the am. I was told I looked fine and obviously was not in a lot of pain and it was mentally noted. At 1 pm I called the nurses in and requested resident the pain was getting severe. By 3 pm no resident had come and nothing was offered to me for the pain. I was told the resident was paged several times. At 5 pm I was not able to move now because of the pain and I was in tears. Still no resident came. I explained to a nurse who was walking by and not on antenatal what was going on with me and 30 minutes the resident showed and told me she was never paged. And that she would do some blood work and that was the last I heard. A nurse asked me if I was offered any tyonel I stated no and was given some a bit later. Still in immense pain at 10:30 pm I requested more tyonel and the results of the blood work. The results were never brought to my attention and I requested another visit from the resident as it was that bad. At 11:30 no one had come and it took everything out of me to walk down to the nurse’s station since the call bell was not getting anyone to come to my room and I requested the results again and to see a resident. The results I was told were in 4-5 hours ago and they didn’t' know why I was not advised of the results. The resident came in a midnight and I explained I had been in pain since 8 am and very disappointed on the time it took to get this addressed. I was at this time examined for the first time thoroughly. More blood work was ordered and the resident explained to me what it could be and not to worry. She ordered more blood work. I was given tyonel 3 with codeine at this point. I was confronted by the nurse the following morning since the resident I had seen first wrote in my file that I was upset because I was not looked at or offered assistance for so long. I felt very uncomfortable and stated that I was in extreme amount of pain for an unnecessary amount of time.

At this point no one came from the NICU to discuss the steroids or surfactant. I was also told that I would get a tour of the NICU when this conversation of the steroids first was mentioned. This did not happen. So the liaison took me herself for the tour. During this time the air conditioner panel completely fell off next to my bed and it was lying on the floor. It was fixed 4 days later.

ON Oct 3rd I was having a nst test at 10:30pm and told the nurse I was feeling strange in my genital area. That was mentally noted as well. Not written down. Oct 4th one of the nurses came in and stated that the natives were restless and demanding snacks, meds, and ice cream for their diabetes. (She was referring to us patients and I assure you they were asking because it was very rare that the snacks were brought and meds were given at the right time and it was necessary that the diabetes patience have their ice cream. Sometimes it would not come till 11 -12 at night and we just wanted to go to bed) this never seemed right to me. This comment by this nurse was unnecessary and unprofessional.



The NICU finally came today to discuss the steroids and surfactant. I decided on having the second set of steroids. Oct 5th - arrhythmia still seen in heart beat of baby B. I had been having contractions all day so ended up in the birthing centre all night with an IV.
Oct 6...got my second round of steroids. the nst showed baby B's heart rate was dropping into the 80-90's this was so scary for me as I knew this was distress and possibly cord compression from a tangle. It took 4 hours before the doctor on call would see me and he used my scan to educate two interns on what practicing breathing looked like. he said he had not been busy however did not see a point in coming down to see me as what was communicated to him didn’t seem to be a concern. I was appalled. I felt he came down to see me in the birthing room to humor me and use me as a guinea pig for his interns. I was not impressed at all. I was more then happy this soon would be over. Then another doctor came in to tell me if they had to deliver do to contractions or decels they were going to ship my babies to buffalo or Detroit (out of my country) because they under staff for the holidays. Hospitals are a place where services are needed 24/7. Software customers have more staff on holidays taking care of internet issues then people with real health issue. This just doesn’t seem ethical to me. People need doctors and nurses to be available even during the holidays. Health is unpredictable and medical care is needed 24/7 and staff should never be shortened because of a holiday. It’s not a customer service industry. I was now so stressed out and upset I was crying hysterically...thank god I did not have to deliver.

Every Monday my urine was taken to check levels. On Oct 9 I had to remind my nurse that my urine had been in the bathroom for 3 hours and had not been checked.
Ultrasound had estimated the baby’s weight to be 3.8 and 4.1 lbs
At 10:49 and 10:50 on Oct 10th Baby A - Gavin Alexander and Baby B- Benjamin Ryan was born at 3.10 and 4.12 lbs
The nurses I had for the first 24 hours on post partum had been the best nurses and the best care I had received during my entire stay.
I was glad it was over. The struggles I had with the doctors, the nurses and the days I had to be persistent and be insistent had ended. I was exhausted. I could
Now enjoy my two babies. I was told I would not be able to hold them at birth and that they would most likely need oxygen but they were in my arms seconds after birth and needed no breathing assistance. There were 3 knots in the cords. One was double knotted and the cord was extremely twisted throughout.

After 2 months in the NICU with preemies (an experience all on its own) we were home to celebrate the Christmas holidays with our miracle babies. The babies we were told may never arrive because of our situation. I never gave up hope and I never stopped fighting.
My dreams and hopes of their survival became reality. After my experience at the hospital
Worrying about sleepless nights and how I would find the money to buy diapers and wipes for twins was a pleasure.

Today my twins are almost two. You would never knowt hey were preemies..and they are going to be in a movie this fall..I lend my ear to anyone who struggles through this pregnancy. the families on the monoamniotic.org website were my angels through this whole thing. if it werent' for them i wouldn't of known
what to have expected what to do or what was coming . they were there to talk to 24 / 7 to be whatever i needed. My Fetal medician doctor told me to ignore them however she advised me she knew little about this kind of pregnancy and she avoided me even after the children were born because i was vocal about the knowledge i had about that and it offended her. she was pretty adament that there was no point in looking to the future when baby B was so small ..she was pretty sure he would not survive and would not discuss further with us any other possibilities.
Either way my boys are here and healthy and i feel very blessed. I can't believe i went through what i went through but i did and i'm thankful for monoamniotic.org and to all those who lent an ear and support. I couldn't not of done it without them.
here are some pictures
http://i89.photobucket.com/albums/k216/tku...ordsforsite.jpg {graphic picture}
http://i89.photobucket.com/albums/k216/tku...8thtogether.jpg
http://i89.photobucket.com/albums/k216/tku.../dec2007129.jpg

 

My story...
I went to the dr. at 6 weeks for an ultrasound (due to previous miscarriages) and was excited to find a heartbeat. We went back at 10 weeks for another ultrasound and discovered that there were 2 heartbeats. The dr. told us that there was not a membrane and explained the rarity of this condition. I told him that my best friend was also prego with mo-mo twins. He didn't believe me. I told him that she had just lost one of the babies, and then he realized that I knew what I was talking about. I still think there are possible environmental causes. Anyway, I went to the specialists 3 times a week until I went into the hospital at 26 weeks. At 31 weeks, during one of the monitoring sessions, Abbie's heartbeat dropped and did not come back up. They rushed me into surgery. I woke up and learned that I had 2 healthy babies in the NICU. They stayed in the NICU for 6 weeks. Now they are very healthy 3 and a half year olds. My little miracle babies. The entangled cord was amazing. The doctor keeps a picture of it in his office. I was and still is the only mo-mo case that his office has seen.
I knew of monoamniotic.org, but I had to stay off the computer. I would read the statistics and panic. I just stayed away from the computer, but looking back it would have been helpful to have a support group during my stay at the hospital.

 

Thank you ladies for sharing your stories. :give_rose:

 

I hope it is ok that I share my story here. My boys were not born mo-mo, but, ended up pseudo-momo at 19 weeks. Still, I went through much of what the rest of the ladies did.

I was a member of the monoamniotic.org website, and met at least one of the ladies here - Jocasta was inpatient at the same time I was. I am so thankful to have had that connection with those ladies - going through inpatient and everything at the same time.

My boys were diagnosed at 14 weeks with TTTS. After having laser ablation surgery at 18 weeks, we found out that a microseptostomy had been performed and a week later found out that had caused their membrane to become torn, and it was floating freely, only attached at one side. The boys' cords were already tangled, after less than a week in the same sac. So, we went from babies suffering from TTTS to little boys that were both suffering from TTTS and pseudo-momo.

I was admitted to the hospital at 24 weeks for monitoring, and we met with neonatologists several times. Between our 2 MFM docs and the neos, we decided to deliver at 32 weeks to try to prevent a cord accident from occurring after that point.

I was monitored three times each day for one hour. This was decided on by both my doctors and me. Boden (Baby B) had an occasional brady episode, but only a few times.

We had an ultrasound each day, usually in the morning. I had steroid shots when I was admitted at 24 weeks. The boys did very well the whole time, and it was pretty amazing to see them daily on the ultrasound. I had passes out of the hospital 3 times during the 8 weeks I was there.

The hardest part for me was that I had a 2.5 year old daughter at home - which was almost an hour away. I got to see her about once a week. My husband was working full time, and my mom and MIL took turns caring for her while he worked weekends. I was pretty lonely - but - thankfully my sister worked in the city I was inpatient in. She did my laundry, kept me company, and brought me magazines, books, movies and other goodies.

I delivered Jacob and Boden via c-section at 31 weeks, 6 days. Prior to delivery I had been having contractions for about 4 weeks, taking Terbutaline as well as 2 pills to keep them under control.

Jacob was 4 pounds 2 ounces and Boden was 3 pounds 8 ounces. I developed a hematoma after my c-section and was very ill, requiring a blood transfusion, and although I got to see the boys very briefly on my way to the birth center (where they put the new moms) I didn't get to see them again until the next night because I was so sick.

The boys did very well in the ICN. Our NICU is pretty amazing - it is state of the art, which is incredible for our small area. We had our own twin suite and could stay there 24/7 if we wanted. Jacob was discharged after 5 weeks 6 days, and Boden after 6 weeks 4 days. We were very lucky that they came home without apnea monitors.

They are both doing amazing today, and are the happiest little guys I could have imagined. They are so fun, so well-mannered.

Here is a photo of their cords:

This pic is still up in the High Risk OB station where I was inpatient. It is still the worst cords my docs had seen. After delivery we found out that Boden had a velamentous cord insertion as well.

http://i97.photobucket.com/albums/l205/t_a_l_i/Newarrivals041-1.jpg

 

Hi there. I also belong to monoamniotic.org, which was a godsend during my pregnancy. I can't say enough about how amazing the members are there. In fact, one of them led me to her MFM, which is the reason my boys are here today.

Here's my story: After over 2 years of TTC, DH turned to IVF. We got pregnant on the first try. At our 6 week ultrasound, my RE noticed the fetuses were very close together. However, there were two yolk sacs, so he was convinced that there were two amniotic sacs and said not to worry. At our 8 week u/s, he noticed that they were still close together and no membrane could be found. He sent me to an MFM for a high-resolution ultrasound. At that appointment, I was a little over 8 weeks. The doctor, who was rather brusque, told me my twins were likely conjoined and we should consider termination. we were about to go on vacation, which he told me to enjoy, so there was little I could do but wait. When we returned, I saw another physician in the same practice. She determined they were not conjoined but confirmed they were mono-mono. This physician discounted all the studies and told me what their protocol was. Unhappy with what I was told, I took matters into my own hands did some research. That is how I came across the monoamniotic.org site. They armed me with every article published on mono-mono twins, which the last physician I saw did not support, and I sought out another MFM in the area. Thanks to a recommendation from someone on the mono.org site, I found one.

This new MFM saw me at 14 weeks and couldn't have been more positive. He had just seen a mono-mono case earlier that year (the woman who referred me to him) and assured me we would get through this. He knew of the studies (which he supported) and he knew the risks. He also knew that I wasn't going to terminate and with that, he kept me as upbeat as possible.

I was seen by him every two weeks for an u/s, doppler, and BPPs. I was admitted for inpatient monitoring at 24 weeks and I lived in the antepartum unit for over two months. I was in the hospital from Thanksgiving through Christmas, and through New Years. My husband slept in the chair next to me every night and my family came to visit me as much as possible. I started off on continuous monitoring, but because the babies were still too small to stay on one spot, they changed my monitoring to three times a day. At 26 weeks, I had a scare. I was told that Baby B had absent-end diastolic flow. I was told that I would have to deliver if the flow reversed. Because of this diagnosis, my monitoring became more frequent. As if this type of pregnancy wasn't stressful enough, this determination nearly sent me over the edge. Fortunately, the flow never reversed and I made to 32 weeks, when my c-section was scheduled. On January 21, 2008, I delivered my boys, Henry and Andrew. Their cords were tangled and knotted and my doctor called the situation a ticking time bomb. There was such a rush of emotion that day. After a pregnancy where everyday I knew there was a chance my babies wouldn't make it, there they were. Miracles.

The boys spent 6 weeks in the NICU, overcoming typical preemie issues. I was on post-partum bedrest for an additional 3 weeks because of a spinal leak from the epidural which caused a spinal headache. I had a botched blood patch and, thanks to a prescription misfill by CVS, couldn't have another. So I had to heal on my own. As a result, I didn't get to see my babies in the NICU for the first three weeks of their life. It was horrible. However, I still pumped and spoke with the nurses by phone every day. We took them home in March and they've continued to thrive ever since.

There are days when I'm exhausted from chasing them around or I'm frustrated with their emerging defiance. But I never forget everything we went through to have them and how it truly is a miracle they are here. Despite all the fear and all the crying with worry for 7 months straight, I would do it all over again in a heartbeat.

 

Well, I was a mom of monoamniotic twin boys for a very short time..if you count being pregnant with them, being their mom. I only got to keep them for 15 weeks. They sent me to 5-6 ultrasounds from 9 weeks on, and still could not find a membrane between them. At 13 weeks, the perinatologist gave me the news that they were definately mono-mono because their cords were already tangled and twisted. They were growing right on track, heartbeats looking great, and they told us they were boys. I sobbed the whole way home, and for a few days strait. We were all praying the doctors would find a membrane and our babies would be safe. I knew they would never find it. I saw my babies hugging at 9 weeks, and touching each other's faces at 13 weeks. That would be the last movement I saw..my babies died. They say that mono-mono twins have pretty good chances of survival until later in the pregnancy, but sometimes it doesn't work that way. God had other plans for my babies. Thank you for reading this..I just wanted to tell my story. There isn't always a good outcome being pregnant with mono-mono twin boys. I hope my story is not the norm, and it seems like it, from all the positive posts.
My husband and I miss our babies that we never even got to see in person, or hold..never got to even hear their heartbeats..the doctor said that would happen the next appointment..the one where they didnt find any heartbeats. Sad. Sleep peacefully my babies Mommy and Daddy love you so much. They took them on 12-19-09, my husband's 34th birthday. Not a happy day, week or month, for our family.
Katie

 

I'm so sorry for your losses Katie! ((hugs))