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Old 06-03-2012, 12:32 AM   #1
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One in a million is not always a good thing UPDATE 6/23

As DS was quickly approaching two the idea of a sibling began to tug at my heart more and more. We had lost our first son at 21 weeks due to a placental abruption and I knew my son would always be missing out on that special bond without a sibling. (I come from a family of six siblings) DH and I talked about it regularly, but he was not ready to embark on this new journey just yet. We had a complicated pregnancy with DS and although the doctors had faith that we would have a much easier time with another pregnancy there are never any guarantees.

One afternoon much to my surprise DH announced he was ready to try for another baby. Even more to our surprise we conceived that same night. We had assumed it would take a few months! Just before Christmas we got our BFP and we were excited. We got started right away at our Maternal Fetal Medicine department in our local hospital and got prepared to take all the measures we could to have a healthy easier pregnancy.

At 17 weeks I got a call from the geneticist saying that the baby had an elevated risk for down syndrome. It was devastating but after much waiting and testing at 20 weeks we found out she did not have down syndrome. However the next week I went for an ultra sound that showed some heart abnormalities.

I was sent for a fetal Echo to find out just what was going on. It was determined that the baby's heart was large but functioning well. Every other week they kept doing ultrasounds until my 26 week apt where they found that there was also an abnormality in the baby's brain. They kept us waiting a long time and finally the Dr let us know he expected vain of galen malformation. He did not give us much information about what that meant for our baby but it was clear that it was not good. Our Dr set us up to go to the U of M Hospital where they could do a fetal MRI, ultrasounds, and Echo to confirm the diagnosis.

As soon as we got home DH and I did tons of research figuring out just what it meant for her to have this condition and what could be done. At first things looked pretty hopeless. Than I found out about Dr. Berenstein in New York who is having remarkable success with children who would not have otherwise made it. This was reassuring for us but we still were waiting to find out if this was really what our daughter had.

On May 24th we went to our appointments at U of M. First we had our MRI, next was our ultrasound where the obs came in and let us know that they definitely thought this was vein of galen malformation. After that we went to the cardiologist for the fetal echo. The cardiologist let us know that our baby's heart was twice the size it should be, pumping about 3 times the blood volume and having some minor leakage in the valves but as of right now it is stable and overall the problems were moderately bad. There advice was to continue to monitor her condition. Than was our meeting with the pediatric neurologist who gave us the results of our MRI. He let us know that there was some minimal signs of brain suffering but that could change as the weeks progress. It is hard to tell prenatally but they were able again confirm the vein of galen malformation. Lastly we went back to the OB who had a much bleaker view of what was happening. She let us know that our baby would die before she reached full term. She gave us no hope that our baby could survive. Although that was hard to hear I knew that we had found hope in the Dr in New York and asked to have all records sent there.

Because of the holiday weekend it took until this past Friday to hear back from Dr. Berenstein. He stated that he wanted me to have an IV heart medication that the baby would get through the placenta. This would help preserve her heart until we could deliver. He believes that if she gets this medication and I deliver in NY, so he can immediately do the needed procedure on her brain, that she would have a chance at survival. The problem is that the OB at the U of M hospital will not agree to this treatment.

Now it is looking like we are going to travel to NY much sooner. This is a scary proposition because we will need to be right in Manhattan. We are hoping we can stay at the Ronald McDonald house but if we cant the cost of staying there is going to be very high. We will also have fly there. I have found a charitable foundation that may fly us there for free but otherwise there will four of us flying to NY and that could be really expensive too.

Although the expenses are scary we have to give our daughter this chance and do all we can to get her this treatment. This condition is extremely rare and only happens in about one in a million children. I just can't believe that this is happening right now. It is all just very overwhelming.
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Last edited by FerventlyDreaming; 06-23-2012 at 01:29 AM.
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Old 06-03-2012, 12:45 AM   #2
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Re: One in a million is not always a good thing

oh mama, I am so so sorry.
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Old 06-03-2012, 12:49 AM   #3
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Re: One in a million is not always a good thing

Your in my thoughts. I hope everything goes well and you are able to stay at the Ronald McDonald house. That must be really scary.
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Old 06-03-2012, 12:56 AM   #4
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I wish there was something I could do to help. Your family is in my prayers.

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Old 06-03-2012, 12:57 AM   #5
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Re: One in a million is not always a good thing

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Old 06-03-2012, 01:09 AM   #6
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Re: One in a million is not always a good thing

I'm so sorry. Stay strong.
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Old 06-03-2012, 06:24 AM   #7
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Re: One in a million is not always a good thing

I'm so sorry; it sounds like you have a long road ahead of you..please keep us updated!
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Old 06-03-2012, 06:33 AM   #8
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Re: One in a million is not always a good thing

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Old 06-03-2012, 06:39 AM   #9
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Re: One in a million is not always a good thing

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Old 06-03-2012, 08:28 AM   #10
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so sorry! I hope the doc in NYC is able to help you all!

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