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Topics: 5 Posts: 13
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 Created about 1 year ago
Today, I found out that my babygirl has Hypoplastic Right Heart Syndrome (HPRHS) It is a congenial heart defect where the right ventricle of the heart is underdeveloped or significantly smaller than the left ventricle.. She will need to have an open-heart surgery after she is born and possibly a heart catheter to help the blood flow into her lungs. They did an amniocentesis today to test the chromosome count from the amniotic fluid around my baby. I will hear back from the doctor by tomorrow with the results to the 1st part of the procedure but I will not know the final results until 2 weeks from now. The doctor told me that if the chromosome count comes back normal my baby will develop just like any other baby in the womb (when she is born she will be a little bit blue though...) They said if the chromosome count is abnormal then there will be no chance of survival. I am hoping and praying that is NOT the case... They also told me that I will start seeing a pediatric cardiologist and a genetics counselor and they will help determine whether or not my baby will need the open-heart surgery imediately after birth or within the 1st week of birth. I will also be going once a month to have an ultrasound done on specifically my baby's heart to check the heart's development and the fluids. That will help determin whether or not my baby will need an heart catheter. If there was any way at all to be able to take the pain away from my baby girl and have the open-heart surgery myself I would in a heart beat!!! I couldn't even begin to imagine how hard it would be for a newborn infant to undergo such a major surgery and it scares me! If anyone is watching over my babygirl and her health right now I know for a FACT that it is God! Prayers go a long way so please, I ask you to help pray for my babygirl! Thank you in advance.
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Mommy -to- be:: June 29, 2011
~MamaAyla <33
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Topics: 22 Posts: 177
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Created about 1 year ago
You are in my thoughts and prayers! If you need to talk you can send me a message, I hope you have a good support system at home and make sure to surround yourself with friends and family. I know it's hard but positive thoughts, prayers, and hope also go a long way. Since your baby is high risk, additional stress can highly affect growth. Just a little hope for you, my younger sister was 18 weeks pregnant when she found out that she was having a baby girl. The next statement from the doctor was Congratulations, but that is the only good news. The baby had fetal hydrops and had a 3% chance of living. Her heart, too was really small but beating strong. It was also surrounded in fluid and swinging in her chest cavity. Same thing with her brain. They highly suggested to "terminate" the pregnancy, but my sister had hope. She went to the best hospital around weekly and had ultrasounds weekly. Slowly but surely, the fluid slowly drained until at 37 weeks, she delivered my baby niece at 4 lbs (considered full term) and was able to bring her home 3 days later. Now she is 2 1/2 years old and is developing perfectly normal. I know surgery is a whole different story, and because of that I think extra prayers should go out to you and your baby girl! I wish the best for you, hun. Keep me posted as best as you can.
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~*Shana*~
~*Mommy to Sadie (9-27-07) and Mason (4-17-10) & Expecting #3 (10-27-12) *~
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Topics: 5 Posts: 13
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Created about 1 year ago
Thank you very much! That means a lot to me! And thank you for sharing your story as well. I know that with positive thought, prayers, and hope God can move mountains!! They suggested that I'd possibly want to "terminate" this pregnancy as well but I know that with God all things are possible!! The case with your sister is truly a miracle and a HUGE blessing!! You never know what He has in store for us with a little bit of faith!! I chose not to terminate my pregnancy because I do have faith that a miracle can and will happen!! I will definitely keep you updated as well. I know I can get as much support as possible! I actually found a great website while I was researching about the hypoplastic right heart syndrome and it is filled with over 200 families who have either a baby that was born with hypoplastic right heart syndrome or a family member who has it as well.. I find it great to talk to other families out there who have been through the same thing and when they share their experiences with me it gives me extra hope that I need! The website is called: hypoplasticrighthearts.org it's a great website!! (:
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Mommy -to- be:: June 29, 2011
~MamaAyla <33
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Topics: 5 Posts: 13
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Created about 1 year ago
Well, I received the 1st part of the results from my amniocentesis that I had done the other day. The doctor said the results from the 1st part all were NORMAL!! I will hear back from the doctor again in another week or so with the results for the 2nd and 3rd part. The amniocentesis has 3 tests the have to take from the amniotic fluid that they removed. Hopefully that the last 2 test results come back normal as well! Keeping my fingers crossed!! I will continue to keep everyone who reads this up to date. And thank you again for your thoughts and prayers (:
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Mommy -to- be:: June 29, 2011
~MamaAyla <33
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