My 20 year old daughter just gave birth to a down syndrome baby. She's been told by a geneticist that it is a rare form, the number 6 chromosome has attached to the 3rd 21st chromosome. We don't know what that means and her insurance won't pay for the testing. We have no money. Does anyone have any quick answers or advice?
The baby also has:
A heart defect, poor to no hearing (he failed the 3 hearing tests at the hospital), a GT tube for feeding is being surgically implanted tomorrow, he was 7 weeks premature, is 3 weeks old and his mother is a Type 1 diabetic with multiple health issues.
I know that this must be a stressful time right now for all of you, (I was there) but I would love to first congratulate you on your grandson. Before you know it, you are not going to believe how much you will all love him. I hope that your daughter has the support of the baby's father as well, but there are many single mothers out there as well.
It sounds like you have a couple of questions so first, ask yourself why you think the genetic testing is important? You already know that he has Down syndrome; the health concerns will be addressed as they come up. All the karotyping in the world (genetic testing) is not going to treat his health problems. As a baby with Down syndrome, even amongst all of his health issues, he is a baby first and he will need a lot of love to grow and thrive.
I was 27 when I had my daughter with Down syndrome and I honestly thought that my world had ended. She needed heart surgery when she was 6 days old and she will need at least 4 more open heart surgeries in her life time. My now 20 month old is not yet walking, but her smile lights up my heart so much more than my son did at that age. I hold her and marvel that some people would want to throw her away (abort the fetus or institutionalize) just because she has Down syndrome. I know that we have a lot to work on, but she is still a person and she deserves love an understanding just like every human being.
Although you need to be under poverty line to qualify for Social Security Disability Insurance or Income, many states have a Medicaid type program available if the insurance is a problem. In CT where I live it is called Husky for Kids, and all income levels can qualify at different levels. Also, every state has a Birth to 3 program for in home services and therapies. The service coordinator may even be able to offer other state aid programs. You will also want to reach out to your state's Department of Mental Retardation or the same. In CT they just change their name from DMR to DDS, Dept. of Developmental Services.
I found a world of support online after I had my daughter. So I started my own blog to share my experiences. My blog is
Congratulations on your new grandson! I know it can be overwhelming right now, but things will get better and you'll absolutely adore the little guy!
My daughter has a G-tube also, so I'd be happy to talk to you about that further if you'd like. She had open-heart surgery at 3 months, and she's been healthy and perfect ever since. Her G-tube is because she's pretty stubborn, not because she can't eat.
It sounds like your grandson has Translocation DS, since he has a part of one chromosome attached to another. I'm not all that familiar personally, but I do know several families who have this diagnosis. It simply means that the way the Down syndrome happened is a bit different than some, but it shouldn't necessarily mean that the journey will be different. Of course EVERY kid is different, DS or not! :)
As far as the hearing issues, many babies with DS have very tiny, sometimes curvy ear canals, so there are often problems with passing hearing tests, even if they can hear. An ABR is a sedated test that is sometimes done to get a better picture of their hearing ability. You might ask the pediatrician about it. And it is true that the baby might be eligible for Medicaid with his diagnosis and if the income level is within the guidelines.
Please be sure to contact your local DS support group. They can help you with many things and are a great resource. If you don't know where your closest group is, please let me know and I will help you find one. my email is braskasmom at gmail dot com. Also please feel free to check out my blog at
http://dsinreallife.blogspot.com to get a glimpse at how great life can be. My daughter is 2 1/2 and is absolutely the delight of our lives!!
My son is 21 years old and has Down's Syndrome (named for John Langdon Down). The testing is extremely painful, unless they have changed it in the last 21 years. My best advice to you is to deal with the medical problems first, and also contact The Institutes for the Achievement of Human Potential near Philadelphia (IAHP.com). They are the only ones that truly know how to help your grandson achieve his potential. The education and medical systems don't have all their knowledge. For funding, contact Children's Miracle Network and the Shriner's.
My heart and prayers are with you all. Don't listen to what the naysayers project about him. Treat him like any other child, just spend more time helping him. You, his mothers and anyone else who give him a chance will grow in wisdom, patience and love. He is a HUGE blessing to you all.
I know your daughter is likely devestated. I was too. My daughter, Carly is now 7 years old. Although she has had many of the health issues that coincide with Down syndrome, she is doing fairly well. Nothing phases her. I quickly learned that Carly was given to me and my family as a gift. She is absolutely precious. In time, you and your daughter will realize that life isn't all bad having a child with Down syndrome. It does get better with time. You will both build quite a strong bond with this child. I have no doubt. Check out my blog @ http://abandcsmom.blogspot.com andleave me a message if you want to chat. I promise. Things get so much better.
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