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Just remember that the AFP and any other test (other than amnio – which I would not do personally) is not always accurate. In fact, I wouldn’t put much stock in any test. Sometimes they are right, a lot of times they are wrong. Glad you are NOT terminating your angel, Ds or not, heart issues or not. They should be able to tell more about the heart issues in the level II u/s. Janna’s AV Canal heart defect was detected at 20 weeks gestation, first by level II u/s and then confirmed by fetal echo. And you are right, things can be different for each child. There are many healthy kids with Ds on this site, there are also many healthy kids on this site who have had heart surgeries. The special things that you should have for a child born with Ds – I think you already have – a heart full of love and siblings that love her already too.
She’s gonna be a precious baby to love and cuddle and care for, no matter if Ds is present or not. If she truly does have heart issues, she may not get to come home from the hospital right away but most do not stay very long unless surgery is needed right away. Depending on the type of heart defect, she could get to go home for several months and have surgery when she’s a few months old. Or in a lot of cases, the defect or holes in the heart sometimes close up on their own and she would just have to be monitored and visit a cardiologist on a regular basis until the holes are closed. You are not jumping the gun – being prepared is a wonderful thing and this site carries a wealth of knowledge and support from some wonderful and loving parents of kids with Ds.
Sounds like you faced a lot with #3 – so glad that she is doing well now. Sometimes feeding is an issue for babies with Ds – so it sounds like you may already have experience with that. It’s okay to break down and cry and I’m glad that your husband and children are supportive. Once his family sees your angel, I pray they will fall in love, Ds or not, heart issues or not.
Your mom may have asked about SS Office because those with disabilities, including those with Ds sometimes qualify for SSI – a supplemental income (not very large) they can receive monthly to help. And no one knows who is right. Merra’s arrival will answer a lot of questions. And yes, many are afraid of and don’t deal well with Ds. So I think they like to warn people so they can prepare as needed. I know some terminate and some give up for adoption, etc. They want you to prepare and make your decisions and I’m glad you are choosing to raise the gift God is giving to you. And yes, some with Ds do have autism, cp, luekemia, etc. But so do typical kids. They do not go hand and hand. Mainly heart defects, GI/feeding issues, thyroid problems, those type things are common in kids with Ds. You can read all about various health issues here on this site. Some have them, some do not. Ask all the questions you want as there is much experience here.
Can’t wait to meet Miss Merra this summer. Keep us updated on your angel. God bless your family, aj
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Momma to Janna (AVCanal-T21-02/02/05)
Wife to Joseph (TOF & still thriving)
"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi
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03-01-2006 08:44 AM
wow
