Still Hopeful

What an emotional week it has been. I'm 18 weeks and we went to our first peri. visit on Tuesday and were sent to Cinncinnati on Wednesday to possibly confirm TTTS. The day was incredibly exhausting and overwhelming...started at 7 am and ended at 7:45 pm. At the end of the day we had a meeting with a team. It seemed that the ultra sound tech and the mri doctor believed it was TTTS, the cardioligist said the hearts looked OK, but it could be an early stage of TTTS and the doctor in the team meeting said he wasn't convinced that it was TTTS. This doctor believed its a problem with Baby A (small/donor baby), he believed that the baby could possibly not make it to delivery and if the baby did he said it would only live for a few minutes (he believes the baby will have lung issues). So our options were quite horrible...termination of baby A (which does not seem like an option to us), laser surgery (not to benefit baby A, only to protect baby B in case baby A does not make it to delivery) or wait for 10 days-go back to Cinn. and then make a decision. Talk about excitement turning into heartache and fear. We want these babies so bad and pray that God will work a miracle.

Questions: Did any of you go through a similar situations with decisions that had to be made? Has anyone been told they didn't have TTTS, but then later diagnosed?

Any experience or advice with this would be much appreciated. We've had quite the heart-wrenching week.

 

I don't have advice but I wanted to send you prayers and :hug99:. Whatever choice you make I wish you the best.

Jen

 

so sorry lots of prayers coming your way.

 

We had a possible TTTS scare over the last 7 weeks but the issues seem to be resolving now. However, during our crisis I sought out as much information as I could, some of it scary and some of it very hopeful and helpful. I highly recommend that you check out the TTTS Foundation website in detail. You can e-mail them and they will get back to you. They have a lot of information they can mail you, too. Another person to check into is a doctor who is a pioneer in the treatment of TTTS. He is Dr. Julian De Lia. I e-mailed him and he called me and offered some invaluable advice, as did Mary Slaman-Forsythe, the founder of the TTTS Foundation. They are very interested in helping everyone that they can in dealing with this syndrome.

Dr. De Lia's website is: http://www.mywheaton.org/programs/ttts/dr_delia.asp

The TTTS Foundation: http://www.tttsfoundation.org/

I hope they are able to help you. I'll pray for you and your little ones.

 

There is really no short way to write this but I'll try. We were suspected ttts at 13 weeks. Confirmed at 15. Set up to see about surgery immediately. Anterior placenta blocking the way. Needed to get worse with fluid. Our levels would have qualified us normally but not with a front lying placenta. Monitoring every week and a few times a week at 3 different hospitals but babies hearts and dopplers stayed good (went back and forth every week but acceptable) They suggested terminating baby B so A would have a chance. We wouldn't have it- we figured she kept fighting if something was going to happen it would but we weren't making that choice. (By the way she is sitting here pulling my hair as I type)At 19 weeks we were sent to one hospital for monitoring and if hearts/dopplers got bad they would inject me with fluid and stretch the uterus to do the surgery. Lots of monitoring- some weeks bad- next week resolved. Had close to a 30% size difference at our growth scans but kept going. Met with neonatologist at 22 weeks in case something happened we would deliver and take our chances with the nicu. Made it to 36 weeks had amnio, lungs were mature, delivered the next day. Baby a (rec) 5lbs 5oz baby b (don) 4 lbs. Both came home with us no nicu. We don't know why we made it with no complications just grateful we did. I drank the boost shakes and ate all the protein I could. But somehow we beat all the odds considering they originally didn't think they would survive til 16 weeks to get the surgery then them hanging on and needing no real intervention. If you pm me I can send you a link to a blog with all the details. Like I said this is the short version I kept track of fluid levels, weights, dopplers bpps and nst etc. but there is hope of a positive turn out.I wish you the best. I know it is hard to process all the info you are given and try to make rational decisions. Worst thing I have ever been through in my life. Good luck.

 

First of all, :hug99: to you.

We started having size/discordance issues at around 27 wks. The fluid levels were always ok, and they were monitored very carefully. Eventually they just fell too far off the growth chart and I was shwoing signs of Pre-E so they were delivered at 35 wks. (3 and 4 lbs basically).

After they examined the placenta, they told me it was probably TTTS, even though they didn't think so during the pregnancy.

Lizzybo gave you good advise; there are a few women on this board who've had the surgery and were successful.

My thoughts are wiht you; please give us an update when you can :hug99:

 

We went through this as well. The same day we learned we were having twins (19wks) they discovered that Baby B had no fluid and was stuck to the uterine wall. After a 3 hour u/s we were told that we may develop TTTS and Baby B had IntraUterine Growth Restriction (IUGR). They did not expect Baby B to survive. We were monitored weekly to check fluid levels and wait for the >2cm and <8cm. We came so close (1.8 and 7.9) but they would not diagnose us until the levels were at the standard. Luckily we live in Tampa where Dr. Quintero is. There are two leading specialists in the world for TTTS. Dr. Q. and Dr. Delia. You are very fortunate to be close to Cinci as they are one of only 7 hospitals in the US that are proficient with the disease. Anyway, back to our story. We were monitored 2 more times before they could see Baby B's kidneys. We were so excited we screamed in the u/s room and disturbed other patients...oops. Those two weeks I put myself on bedrest, laid on my left side and drank milkshakes (couldn't drink the boost) and a lot of water. For the next 2.5 months we were monitored weekly for fluids and never qualified for TTTS. The boys were born at 33 weeks. Baby B's fluid was up to 9cm and Baby A's was 2.4. We thought they had reverse TTTS. Anyway, after they were born the placenta was examined and (drum roll please) there were TWO placentas fused together. No chance of TTTS. Baby B was born several ounces smaller than his brother and did have IUGR. His placenta was black and dying so he wasn't getting enough nutrients. Fast forward 7 months later and Baby B is 2 lbs bigger than his brother and they are both happy, healthy boys. Having twins is a roller coaster that will consume your life. If you'd like any info on Dr. Quintero and his staff, please PM me. I have never trusted anyone more and I felt I had the best care. I also know that if you call Dr. Delia or Dr. Quinteros offices, they will help you as much as they can and consult with your doctors. They truly care about their patients and saving lives.

 

I am praying for you and your babies. So sorry you are going through this... :hug99:

 

:hug99: Lots of hugs. :hug99:

 

I am not going through the same thing as you, but I do want to send hugs. Basically, I don' t know if you read my post or not, but my baby A is measuring about 3 weeks behind and is already a pound behind. I am trying to remain optomistic and believe the best will happen. That is the best thing you can do for the babies.

I hope everything works out for you and the babies!

 

Ladies...I can't thank you enough. This website and its users are wonderful-the advice and support is amazing! Lizzybo, thanks so much for the advice to contact Dr. De Lia and Mary Slaman-Forsythe-I plan on doing that tomorrow. I have been on the TTTS foundation site many times this week and have found that to be very helpful.

Did any of you put yourselves on bedrest with the Boost Diet or were you put on bedrest by a doctor? Just wondering if this is something we should try...I just don't want to look back and think, I wish I really would've tried...

Thanks again so much, I have a Dr's appt. on Tuesday and will make sure to post our latest update!

:hug99: to all of you!

 

Hi, I'm over here and at the TTTS Foundation message board too as we have been diagnosed with TTTS. Our case was caught at 21 weeks, and I didn't have the laser surgery. We also have not had anmnio reduction due to fluid levels not high enough to warrant risking membrane rupture, etc. We've held tight in Stage I since 21 weeks, but every appointment brings new anxieties.

But there is hope. Do consult Mary and Dr. DeLia! I spoke with both of them by phone, and it was helpful. They make themselves available, so take advantage of it! The folks at the message board will also be helpful and offer encouragement (as you probably already know).

Don't give up, arm yourself with as much info as possible, and push your doctors. . . I have discovered that some docs are really quite ignorant about TTTS and think the treatments are too controversial to attempt. But as patients, we deserve to have these choices. I think many babies have been saved because the parents got these choices from an educated, compassionate doctor.

Please contact me if you want to do so. . . you and your little ones are in my prayers tight now as I pause!

 

I'm glad to help. I was amazed at the personal attention I received from Dr. De Lia and Ms. Slaman-Forsythe, when I wasn't even confirmed as TTTS. With their coaching I felt empowered to take some of the situation into my own hands. Per Dr. De Lia's advice I drank Boost 3-4 times a day (he said to sip it very slowly so each drink lasted 2-3 hours) and did the bed rest. After a little over a week we saw a great difference and as of Friday the situation appears to be resolved. We still don't know if my babies are mono or di, though we now think they are di. I'm pretty sure that the high protein drinks (make sure you get the ones that are high protein) and bed rest helped a lot.

Also, I have been getting the high protein drinks with the Safeway brand. They are in cans, but I think they taste better and are about 1/2 the price of Boost.

Please update when you can.

 

:hug99: Based on amniotic fluid levels at 16-18 weeks (late November), it was thought my girls had TTTS. We got info from the TTTS Foundation, and I spoke with Dr. DeLia and drank Boost. By February (26 weeks) their fluid levels seemed to be evening out. I could never officially be diagnosed with TTTS because their levels of fluid were never >8 or <2. When the girls were delivered my OB said their fluid levels were on the high and low sides of normal, and that he didn't think they had TTTS, and their weights were only 4 ounces apart.

We were given the option to terminate, but chose not to. Ironically, I believe it was the donor baby that would have been terminated, and that is my survivor. Don't let my outcome scare you. My OB believes TTTS did not cause Olivia's death; it was just something tragic that happened, like SIDS but before birth, since no cause was able to be determined for her death.

Like the PPs have said, drink the Boost!! I do think it helped reverse whatever was going on in my situation!!

 

My baby A was found to be much smaller than her sister and had low fluid at 30 weeks. bedrest and Boost helped us. Our girls are fraternal so it was not TTTS but it was very scary. You are in my thoughts and prayers

 

I think the Boost/bed rest helps with these issues whether it's TTTS or not. It just makes sense to me and it really helped our babies.

 

I also on the TTTS foundation board, but PM me any time.

You know, we were diagnosed with TTTS at 17-ish weeks. One week discordance (20%). Baby B had no fluid (shrink wrapped) and abnormal dopplers (absent end disatolic flow). Baby B also had a 2 vessel cord and velamentous cord insertion, which didn't help. Baby A had only normal fluid (3-ish) and some abnormal doppler flow.

I went on strict bedrest at 18 weeks, - drank 3 Boost drinks per day. I talked with Dr. Delia and Dr. Quintero's offices. I did not qualify for the surgery. (BTW, Dr. Delia does do surgery on people with anterior placenta). Our fluid levels weren't discordant enough. Dr. Q's office thought we had SIUGR (selective IUGR - like a placental share problem in addition, kind of). My peri said my "babies were very sick" and there was a 50-100% chance that one or both would make it. She also mentioned cord ligation - something I wasn't willing to consider.

So we had to wait until things got "worse" for us to get the surgery. It was agonizing, stressful and very emotional. I cried all the time. I know that TTTS is a roller coaster.

Well, my 22 weeks, the dopplers had normalized, the bladders were visible, and both babies had normal (but lowish) fluid. Hearts and everything looked good.

The discordance continued, but they kept growing on their own curve. We had growth scans every other week, and BPP (other item) scans every week to see if things were progressing in either direction.

In my case, once my TTTS stabilized, it stayed stable. I also stayed on bedrest for the duration. Difficult for 21 weeks, but worth every minute. I delivered by scheduled c-section - no preterm labor at all (both babies were breech) at 38w4d. The babies were small - only 5lb2oz and 6lb1oz.

You are the best advocate for your babies - do what you need to do. We are here for you. PM me anytime - I'm here to help - I know what you've been through.

Hugs, and keep it up - you're doing great - focus ALL of your energies on these babies - do not give up on them - there is hope. My little ones are proof.

Jenny

 

My girls had severe TTTS. I live in Cincinnati and worked at Cincinnati Childrens Hospital Medical Center but they didn't have their Fetal Center then. Luckily my OBs were amazing and connected me to perinatologists at Good Samaritan Hospital,which is known for it's NICU and SCOB (Special Care OB). At 19 weeks it was suggested my girls shared the same placenta and not just 2 fused together. By 28 weeks Baby A had NO fluid and was shrink wrapped and referred to as "the stuck twin". Baby B had waaaay too much fluid. I was admitted to the hospital on strict bedrest at 28 weeks. I had a total of 3 amniotic fluid drains, many BPPs,ultrasounds, NSTs,etc etc etc.......At 35 weeks I delivered my girls and they were only 5 ounces apart. A was pale and B was beet red for weeks. I was very lucky. Please demand to see a perinatologist just to be extra safe! Keep us posted PM me anytime!!! Being admitted the night before my son started first grade and staying there for a month was the worst time of my life but it was SO worth it. I went home on strict bedrest at 32 weeks and delivered at 35. I was lucky that my amazing OBs caught my TTTS when they did. One more day without treatment and my girls would not be here.

 

I'm so sorry you are going through this. :hug99:

We were diagnosed with TTTS at our very first ultrasound at 19 weeks. I had my first amnioreduction that afternoon. Due to the risk of preterm labor, I was put on bedrest following the amnio for a few days. After that, I kept myself on partial bedrest and followed all the advice I could find. I drank the protein drinks, drank tons of water, weighed myself daily to watch to fluid gain, and ate a LOT. I was never hungry because I had a set list of food groups that I wanted to get to my girls every day. Baby B was not only our donor baby but also had a 2-vessel umbilical cord so she was facing a double-whammy nutrition-wise. I had another amnioreduction at 25 weeks and was on hospital bedrest for a day before being discharged to home bedrest for a few more days. I then went back to my self-imposed partial bedrest.

I was at a large children's teaching hospital that was well-versed with TTTS and had access to the surgery up in San Francisco. I didn't have an OB, only a main peri and the peri's watching my case thought we'd never make it past 30 weeks. Well, we made it to 35.3 weeks before Baby B (donor) stopped growing and we had to induce. The girls had a significant size difference and Baby A had immature lungs. It's pretty common for the larger recipient baby to have some health issues at birth while the donor baby is more healthy due to growing under the stress. Our tiny Baby B went straight to the Special Care Nursery and came home at 3 lbs 11 oz. Baby A came home from the NICU 2 days after her sister. After discharge, neither had any negative effects from their womb adventure.

Again, I'm so sorry you are dealing with the fears and stresses of TTTS. If there is a chance your babies could be affected, be pro-active and make sure they get in to check you by u/s again in the next week. Since it's still a question of "if", another u/s should give them more information. In the meantime, rest and drink those protein drinks.

 

Jenn,
How did the appointment go yesterday??

 

good luck to you !! :love0028: --there are so many inspiring stories!!

 

Our appointment was rather confusing. My peri said according to the doctor's notes, mri, echo, and u/s performed in Cin. he would think they diagnosed us with TTTS. If it wasn't for my call into the Genetic Counselor regarding the news from our trip he wouldn't have known anything about the comments concerning Baby A ("baby problem, too large of heart, baby won't survive, etc.") According to my peri, none of these problems that the doctor in Cin. told us shows up anywhere...and he's not seeing the problems himself. He still believes that we should be diagnosed with TTTS (stage III). We have a 50% difference in weight, which I know is one of Dr. Delia's criterias for surgery. I felt that this news was encouraging, even if confusing...how did those comments not make it into the doctors notes? Prayers are working..they are giving us encouragement and hope and I'm sooooo grateful to every prayer that has been said.

So, my peri put me on bedrest at 19 weeks, also said to drink boost 3x a day between meals. We return to Cin. to see the doctors we were supposed to see originally on Monday; hopefully, we'll receive some answers. I just hope we didn't waste 10 precious days for our babies.

Thank you everyone for your thoughts, prayers, support and encouragement. I don't know what I'd do without my family and you wonderful ladies on this site! More updates to come...

 

I'm glad you got some answers at least. So are the orignal notes valid at this point or not?
Are you goign to have the surgery? :hug99: Positive growing baby (((((vibes)))))) to you!