5 Aralık 2014 Cuma

Our Story with Amniotic Band Syndrome

I just wanted to tell how we have learned that our baby will born with amniotic band syndrome and how we handle the situation because reading stories helps and after reading these stories you feel that you are not alone.
On my 20th week visit they couldn't see our little one's left hand three middle fingers at the ultrasound check. So they wanted us to come back a month later. But we didn't realize that there is something wrong because the doctor told us that this is a common situation, possibly she was fisting her hand. We went our second ultrasound examination to the same center a month later and they told us the same thing but this time they wanted us to go to a specialized center for ultrasound. So we were still couldn't understand that there was something wrong. Because they told us the same thing that this is common, possibly she was fisting her hand. And we were young. There was no problems in our family health histories. We were healthy. I had no problems other than morning sickness in first four months of my pregnancy. I had a flu but it was not severe. I was eating healthy. I was exercising. I was a perfect pregnant so do our baby, we were thinking. And the doctors didn't gave us a little clue about there might be a problem. 
At the specialized ultrasound exam we learned that our little one might have some missing body parts because of amniotic bands. On that exam they couldn't see the fingers again but when the doctor saw the amniotic band he relate it with the missing fingers so he told us "I saw an amniotic band so may be thats why we couldn't see the fingers because they are missing. So she might born with amniotic band syndorme." After his sentence my head gets bigger and bigger and I started couldn't hear anything. And the questions were flying over my head. What was amniotic band and amniotic band syndrome? Does it hurt our baby? What we will gonna do with a baby who is missing fingers? Why me or us? What did I or us did so that happened to us? And many of kind of questions. I was feeling desperate and sad. And I was feeling guilty for my husband and my baby. Because I did something wrong, so my husband will have a disabled child and my baby supposed to be in the most safest place that she can be on earth but it is not, contrarily it is harm for her. Especially the idea that I damage some parts of my baby was hurting me a lot. After I started hearing the doctor he was giving some information about amniotic bands. I listened him really carefully. But they were not deep enough. Sometimes I was looking at my husband and he looked at me. And I understand that he was thinking and feeling the same way. May be the doctor talk about that syndrome just only a few minutes and he told us to come back two weeks later on my 30th week.When we went to the car. We cried together. His support was priceless. 
After we came home we started searching about amniotic band and amniotic band syndrome. There was no treatment after the band demage any body part but if it stick to a limb but hasn't damage that limb, some specialized centers can release that band until 30th week of the pregnancy with utero surgery. It is risky but I think it might be worth it in seriorus cases. 
After we learned that there will be a chance that the doctors can release the band and our little one can have 5 fingers. We tried to reach our doctor from the center specialized in ultrasound. Because utera surgery can be done if there was no damage on the limbs yet and before 30th week. And he arrange an appointment on 30th week. So if we went that appointment and if there was no damage yet we will be late for the utera surgery. Finally he arranged an appointment for us in an advanced fetal care center on my 28th week. So they can saw if our little one's fingers are missing or not and if not they may perform an utero surgery to release the band. But in that center they couldn't saw the fingers, that means there was nothing to do. But they wanted to see us almost every week until our little one was born. Because still there were many risks so that the doctors wanted to watch her development weekly. 
After that appointment I have cried almost 2 weeks. I was really demoralized. But one day while I was talking one of my OB friend from Turkey, I understand if I continued like that way some complications can be occured in my pregnancy. And that will be more harmful for my little one. And while I am so negative I can not do anything to help my little one. So I promise myself  to be more positive. I started to read the stories who born with amniotic band syndrome. It was really helpful. We arrange appointments with an Orthepedic Surgeon and NICU. Because may be as soon as she born she needed to have a surgery. We arrange every health care needs before she was born. And we read many things about amniotic band syndrome, possibilities like prosthetics and baby needs. Simply we focused on how we can improve her life.
She borned on 37th week, one week before scheduled induced labor. When she came it was a magical moment like for everyone. I couldn't belive how beautiful she was. After a while I started to check her body. First I started with her left hand. Three middle fingers were not totally missing, they were bounded. I was feeling lucky because the doctors told us that they might be missing. So I tought "Ok they are not like healthy finger but we can find some way to improve their functions as long as we are together." She made me feel really strong. After that hand I continued to check her body and we saw that her both foot are affected by amniotic bands. Some of her fingers on both foot are missing or smaller. But we were still thinking positively. We took a note to ask condition of her foot to the orthopedic surgeon that we arranged weeks before. Our little one born with amniotic band syndrome but we think that we were lucky because all of her effected limbs functions are really good.
Now she is 14 months old and she is using her left hand really good, she can not hold a big ball but she can use fork. And she started to walk. After we learned that she will born with amniotic band syndrome everyone was telling me that I did nothing to cause that situation but I was not accepting that until I saw her growing and improvement. Now I know she will find her own way. Sure we will have some problems but we will handle them together.

Hiç yorum yok:

Yorum Gönder