My Baby Was Born with DiGeorge Syndrome.

Updated on July 21, 2011
A.T. asks from Fort Lauderdale, FL
9 answers

Hi
If you took your time to look at my past questions; you will see i had a very hard complication during my preganancy. My baby appeared to had a CYSTIC HYGROMA which it went away by the 16th week of her life. Before i get into the whole story you should be aware its very long.
So i was happy the CVS results came back normal...i was always positive about everything but, always on the back of my head i had my doubts. I remember laying on my bed for hours crying and praying to God those results would come back normal even if they werent right. why? not a lot of people around me agreed on keep on going with the pregnancy no matter what the results were. I have always been against abortion even when i was really a kid. Anyway...when it was time for fetal echo, i had it done...something wasnt right of course. But my boyfriend and I decided to block everyhting and pray to God and hope for the best. Probably an unresponsible decition on some individuals eyes and for those that believe in God strong as I do kinda makes sense. To not make this too long I was aware there was something not right with her heart. the day i was enduced i told the nurses and Doctors about everything in fact, i was a RPICC patient. It was a vaginal birth she was 7.5 pounds. when i first heard her cry I felt amazing but she sounded not like other babies. She sounds horse when she cries. I live in West Palm Beach Fl. she was transfer to Jackson Memorial hospital in Miami in the tomahawk. It was painful to be in labor for 21 hours and Boom!!! your baby its gone miles away from you. I was sleeping on my room with no baby just crying and asking God; what did I do for this to happen to my baby...not even to me because at the end shes the one with the problem. At the hospital they ran a genetic test call the FISH. Its specifically to detect Di George syndrome..they requested this kind of test since she was born with a heart defect. she was hospitalized for 2 weeks. As a Di George baby she also has something call hypocalcemia (low calcium) she came home on calcium everyday. No need of heart surgery, at least for now. She needs 4 different specialist which are cardiology, endrocanology, genetics, and the one for her kidneys. and of course her head pediatrician. This journey has been really hard on daddy and myself. Sometimes i just wake up sad for her because i wish i could do something to take all those problems away. she needs blood test every 2 weeks to make sure her calcium level is normal. They told me would develop so much slower than normal babies. Basically everything that babies do at her age she would do it later on. Guess what?shes turning 2 months tomorrow... she eats 6 oz every 4 hours shes now 10.4 ounces. , she smiles at me when i speak to her, she sucks on her thumb, she drinks on nipples number 2...she starting to roll over by herself shes a very very great sleeper..enjoys classical music on the while she goes zzzzzzz....shes even trying to touch the toys hanging on her little sitting area. And yes Im not lucky im blessed. I feel like God blessed me that way because i didnt terminate the pregnancy i hope everything goes well as it is right now. but the whole point of me writting this its the following:
1. If you are currently pregnant and found this article because you were told something might be wrong with your sweet pea and your re looking for stories, advice etc...well here's mine; dont give up on your little one. This is what i told myself. "I rather God take her away from me, but at least I know i gave her the chance to come to this world" with taht enough said you go on and make your own decition.
2. Now that Iam a mother of this little special baby, i want to parents that had experience this or they currently going through it. im here for all advice and all ears for you moms going through pain and sadness.
And please if you would like to ask me something feel free to do so...theres more to the story but I just dont want get you guys bored :)
If you have a a baby with this same condition please contact me and tell me about your story. you could also find me facebook me as A. Treminio or by my email which is [email protected]____.com Thank you very much for reading may God bless you and your family.

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J.C.

answers from Philadelphia on

Wow, your story really touched me. God bless you and your daughter! I found out during my third trimester that my baby had severe brain abnormalities. The docs advice was to go to Kanas City for a third trimester abortion. This was not an option for us and I am now so grateful for the 17 days I had with my beautiful little boy.

8 moms found this helpful

A.C.

answers from Oklahoma City on

Wow! Thank you for sharing this story! I will be praying for ya'll and hope things go well for you!
I am due in two weeks with my 5th baby. One side of his heart is larger than the other which makes them think he has a coarctation (narrowing of the aorta), but they won't know for sure until he's a couple days old. He could also have Cystic Fybrosis. I am getting more and more nervous about delivery but, like you, I am trying to just give it all to God and know that He knows what's best for me and my sweet baby!
Thanks again! :o)

7 moms found this helpful

T.N.

answers from Albany on

Wow, I am not familiar with the syndrome, but I am familiar with a special baby. My middle child was born at 26 weeks, 1lb 11oz.

I hear amazing strength in love in your post, and I think your special daughter is very fortunate to have you as her mom.

I wish you and her the VERY best, and hope you will keep us posted.

:)

7 moms found this helpful
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P.K.

answers from New York on

Ana, First let me say congratulations on your beautiful little girl. You sound
like an incredible Mom. You just keep doing what you are doing because
obviously, she is doing well. There are varying degrees of this syndrome,
if I remember correctly. Hopefully, she has a the lesser variety. You just
treat her as normally as you can and try to treat her as you would any other
baby; talking to her, singing to her, etc. I will keep you in my prayers. God
Bless Your Family.

6 moms found this helpful
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L.M.

answers from San Antonio on

thank you so much for sharing your story. It is very inspiring. May god continue to watch over your new baby.

6 moms found this helpful
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R.C.

answers from Phoenix on

I am so very touched by your story and I'm praying for your family tonight. I thank God for you and your honorable decision to have your baby and let her meet her Mom and Dad. May God bless you and use you to bless others who share your journey. My eyes are full of tears---mostly just H. tears though. Nurse Midwife Mom

5 moms found this helpful
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A.N.

answers from New York on

Wow, you've suffered so much, but I'm so H. that things are going so well now. I think it's wonderful that you are trying to make something positive out of all you went through by wanting to help others in the same situation.
God bless :)

4 moms found this helpful
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M.A.

answers from Phoenix on

Please dont give up. My some was sick for the first two years of his life and it took 2 other little boys loosing their lives to figure out what he has. It is never too late and God is bigger then any illness.He wont give us more then we can handle. My son is now healthy and reciving infusions every week BUT he is a healthy 5yr.

2 moms found this helpful

S.T.

answers from Kansas City on

the only thing I know about di george syndrome is what you have just told me. I want to say thank you so much for telling your story and for loving your child more than yourself!!!!!! I have 3 sons, a 2 year old and 7 month old twins. all 3 of my boys were born with bilateral cleft lip and palate. my oldest has had 2 surgeries so far with 2 to 3 more to go. the twins had their first surgery in march and their next is in november with about the same ammount to go as big brother. we found out at our 20 week ultrasound both pregnancies. I know that what they have to deal with is sooooooo minor compared to your daughter. but i just want you to know that you are amazing. My mom told me that God gives the babies with special needs/birth defects etc to the very best parents because he knows they will get the love the need and deserve. made me feel better to hear that. I will pray for your family. God bless you all!!!!

2 moms found this helpful
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