DiGeorge's Syndrome

​I was curious about this site, and was describing DiGeorge's syndrome to someone. Here is an article that may help understand the condition more. I found out that my husband had the disordered shortly after we found out I was pregnant with Makenzie. We had just gotten married and he ended up in the hospital. I knew he had heart surgery as a child, but I did not know at the time he had a genetic defect. We were told that there was a 50% chance of any child we had having the condition. That did not deter us. My oldest is from a previous relationship. Our two that we have together are perfectly healthy. I just learned a few weeks ago that our newest addition may have the disorder. They found two heart defects, an interrupted aortic arch and a large hole, or VSD as they called it. I am due three days before Christmas. Our new addition is now being monitored very carefully, and we are delivering at the University of Michigan Hospital in Ann Arbor, in order to prepare him for surgery immediately following his birth. There are a lot of other unseen issues that may go along with the disorder, including clef palate or lip (neither are present at this time), mental retardation, feeding issues, immune problems, calcium problems, learning difficulties, and problems with the kidneys. I am more concerned how my other three; 5, 2, and 1, will handle mommy having to divide her time between them at home and their brother in the hospital, especially considering it is Christmas. As you can tell, I don't have a lot of other outlets for my concerns.

http://www.mayoclinic.com/health/digeorge-syndrom…

03
Amanda HurleyFlat Rock, Michigan
Moms Expertise
    09/20/13
    Amanda, thank you much for the article - it definetly will help someone with the same problem as yours.
    You and your husband are brave - not everyone can find the power to become parents knowing that your kids may have the same disorder... It seems you are loving and caring family. So think your kids will understand - your older can understand and may be helps you with younger ones.
    My step-sister has 7 years old daughter and few month ago she gave birth to twins - one of the newborn girls had bowels problems and needed the surgery. This newborn girl has been operated in the other hospital - my sister was far from her at this time...She has to be in lying-in hospital with other newborn + the oldest daughter at home...
    Now everything is already fine with both of the twins - and my sister is the happiest mom. She says: "It was really difficult - but I has not think about it while it was happening, I just did what I have to. And all troubles has gone)."
    2
      09/20/13
      8Theresa Gould
      Thank you for sharing. I've never heard of DiGeorge syndrome. Sorry you have to go through this. Do you have family to help you when baby arrives? Your other children are quite young and probably only your five year old will remember. If you prepare them ahead of time by telling them you will need to spend time with baby in the hospital, etc. I think it will help them. Talk to them during the day on the phone or facetime with them, those things will make it easier and make you all feel connected. You can send them photos of you and the baby or facetime with baby too and make it more real for them, rather than it all being abstract and hard to understand. Involving them will help them feel a part of baby's life at the hospital. You only need to show what you want to make them feel connected, you know?
      1
      09/21/13
      Amanda Hurley
      We have a good support system. I am most worried about the kids and Christmas. My five year old has already been told, and understands what is going on. She is crushed that she cannot stay at the hospital with me and her brother, but she does get what is going on. We have also sent a note into her teacher telling her what is going on. I know it will be fine, but I worry so much.
      1
      10/03/13
      8Theresa Gould
      Children are resilient and if she has loving family members taking care of her, hopefully they will keep her busy and occupied and she'll get to visit you, no?
      2
      10/03/13
      Amanda Hurley
      I really don't know what the policy of the hospital is. I may end up having to stay in the Ronald McDonald house, so she should at least be able to see me. Right now we live 45 minutes from the hospital I am going to deliver at, so I will not be home. We are trying to move closer to the hospital, but we really don't know anything yet. I have a few resources that are trying to help.We are just praying,
      1
      10/03/13
      8Theresa Gould
      I'll be praying with you then, as moving closer would be so helpful to you in your transition time, not to mention for your delivery.
      1
      10/03/13
      Amanda Hurley
      Don't forget that I live in a two bedroom. We need more space as well. Lol. Thank you.
      1
      10/03/13
      8Theresa Gould
      Ok, I'll pray for more space too! :)
      1
      About Amanda Hurley
      Current: Flat Rock, Michigan
      Birth: October 04
      On Moms.com since: Sep 20, 2013
      I am a 28 year old SAHM of four children. Mr. Connor is my son. I am looking for some additional help for a permanent grave marker. If you would like to help with expenses or would like to send a card, please inbox me for an address and details. Thank you