Hydrocephalus?

I am going to be honest here. I have never been so scared in my life. I am 26 weeks and 5 days pregnant with Identical Twin Boys. In January, they boys started showing signs of Hydrocephalus, with they were saying was very mild at the time with normal cerebral growth. The fluid measured 1.8 cm in both boys that day. Mid February, the fluid had increased to 2.4 cm. But the doc still felt they could still be normal after birth with the help of shunts. THEN, almost 2 weeks ago, the fluid was about the same and even a little bit less. Than last week, the fluid had stayed the same in Baby A, but showed brain matter that was under a lot stress. And Baby B's increased fluid increased to 2.8 cm.

We met with the neurosurgeon and he gave us little hope at the baby's recovering well. He even mentioned termination, which totally broke my heart. I kept thinking I am their mom and they are old enough to live outside me...How could one think of that?! I am at a loss of what to do or how to deal.

Is there anyone else who has had any dealings with Hyrdocephalus? Or know someone who has?

 

I am so so sorry to hear what you are going through right now :hug:
I unfortunately do not have any experience with Hydrocephalus but know that you will get some good support here :grouphug:

 

I dont have any experience either. :hug: Would it be worth asking for a second opinion?

 

I am so sorry you have to deal with this. :cry: :hug: Can you get a second opinion? Did the doctor mention if they could deliver them now, would your son have a better chance? :hug: :hug: :hug:

 

I am so sorry to hear about this. I don't have any advice...but you might ask your doctor about delivering ONLY the baby with the problem...that might keep it from getting worse, but let the other baby continue to grow??? Hang in there!

 

I am so sorry to hear your news. I have not had experience with this but one of my twins has been diagnosed in utero with multiple heart defects and I was also given the option of terminating and told she had a 75 % chance of survival with numerous surgeries after she is born. Hence, I can relate a little to what you are experiencing. :hug:

Nothing can prepare you for this news and nothing anyone says will make you feel better. I can tell you what we are doing wiht my Twin B Rosie though. The cardiologist gave us the worst case scenario and we were devestaed. My husband and I chose to keep carrying my little girl. We have asked numerous doctors there opinions. We are gathering as much information on her condition as we can so we can understand everything after she is born. We have switched to a high risk ob for the remainder of the pregnancy. We have been through the NICU at both the hospital I am delivering at and the children's hospital she will be transferred to. During our visit we were shown all the equipment that would be used in the NICU and were able to speak to other mums that had experienced similar things. This made us feel much more comfortable with what will happen after she is born. We have joined a support group for heart defects which has been fantastic. Speaking to other mums who have coped through these situations really helped me. We have also come up with a basic plan for managing my two year old and my otehr twin after the birth. I know this is a different situation, but doing these things really helped me come to terms with all this. We have been told numerous times during the pregnancy that she wouldn't make it another day or another week, but we are taking each day at a time and she is hanging in there.

Each day is still a challenge for me and I am still petrified about what will happen after the birth, but I can't change anything so I need to prepare myself as much as possible for every outcome.

I hope this helps in some little way. I wish you all the best and you and your babies will be in my thoughts and prayers. :hug: Just remember you are stronger then you think and you will make it through this one day at a time.

xxxxx

 

:hug: I am so sorry that you are having to face this! I can't imagine how hard that must be. I don't have any experience with hydrocephalus in utero, but at 12 months old my DD had a huge head and they were worried it was hydrocephalus. The Dr gave me a worse case scenario run down (with the shunts etc...), and sent her in for an MRI. Thankfully, it came back normal. One piece of advice I can give you is to stay away from googling it! You will drive yourself crazy. I know it's incredibly hard, but try your best not to worry. Your babies need you to be strong right now. Good Luck and Keep us posted!! :hug:

 

I am so sorry to hear about your scary news, my prayers are with you and your precious little ones! I have no experience with it but so often babies can beat the odds, so keep your hope up. :hug:

 

:hug: :hug: :hug:

 

:hug: I am so sorry you are having to deal with this. Until those babies are born and you know exactly what you are dealing with, it's all out of your control anyway. Ultrasounds are not always 100% accurate. So, hang in there and I will definitely be saying prayers for you and your babies!!

 

:hug:

Thanks for all the hugs! As for an update, this past week...the fluid looked the same. My perinatologist at least told me had seen normal brain development. He even took the time to show me the difference of why it went from mild to severe and showed me the existing brain matter. He thinks that there is very little chance that the boys will not have some type of neurological damage at this point. We won't know how much till they are born. So, at least he is not pushing the termination like the surgeon was.

Both boys have fluid, so he thinks it could be a genetic trait that has been hidden in my line for some time. So, early delivery is not an option...mostly due the fact that the babies have to be stable in the nicu before they will even think about fixing the problem with the brains. Therefore, I am on bedrest to keep them safe and warm as long as possible.

Please keep me and the boys in your thoughts and prayers!

 

[SIZE=12pt]Oh my, i am so sorry you are having to deal with all of this, but you sound so brave and together. I am keeping you and your precious little bundles in my thoughts, :hug: :hug: :hug: [/SIZE]

 

I just wanted to send some thoughts and prayers for you and your boys. I will hope for the best. As a PP said, look into everything you can to prepare for their birth - visit the NICU and connect with the best children's hospital you can.

 

I just wanted to offer you some words of encouragement. My son was born with an arachnoid cyst and hydrocephalus. This was not diagnosed until he was around 6 months old when his body never caught up with the size of his head. The cyst was so large his brain was only occupying about half of his skull and the rest was fluid. He had two surgeries to get the cyst managed (via a shunt) and then as that got smaller they realized he also had hydrocephalus. He then had two more surgeries and the additional of another shunt, so he now has two. All of these 4 surgeries were done over the course of one year and needless to say I thought it would never end and it was the worst time of my life. He has not had any further problems for that past 2 1/2 years and is almost 4 now. He is so perfect you would never know that he has hydro or the cyst. There are no learning disabilities, no developmental delays, he is like every other kid. Don't give up hope that yours can lead a normal life as well. Big hugs to you and your family :hug: