Parents and siblings of children with Down’s Syndrome are amazing people, as are the children themselves. Often times, the family members learn so much from the child with Down’s, but it is definitely a challenge I can only imagine. As a pregnant mother, I refused all testing that would have revealed if I had a child with Down’s, as I would like to think I would have delivered, accepted, and loved my child no matter what. I had two friends who received false positive results on their AFP tests, but they delivered healthy babies.[social_buttons]
Often times, families chose to abort rather than birth a child with Down’s, but now there is hope this syndrome can be treated in utero.
According to News Scientist:
When fetal mouse pups that had a syndrome similar to Down’s were treated with nerve-protecting chemicals, some of the developmental delays that are part of the condition were removed.
Children with Down’s have an extra copy of chromosome 21, while mice engineered to have a similar condition are given an extra copy of a segment of chromosome 16. In both species, the development of certain motor and sensory abilities is delayed. These “trisomic” individuals may also have learning difficulties and symptoms of Alzheimer’s later in life.
Inhibiting the neurotransmitter GABA in trisomic mice can improve cognition and some have suggested this could be used in children. It would be even better, however, to treat Down’s before a child is born and so improve cognitive potential.
As a mother of a child who has experienced developmental delays due to a congenital heart defect, I believe I would undergo in utero treatment to have eliminated these delays. We need to accept humans in all shapes, sizes, and conditions, but it is wonderful that we can also heal them and provide them with a healthier life.
Armed with this knowledge, Catherine Spong and colleagues at the National Institutes of Health in Bethesda, Maryland, injected NAP and SAL into mice pregnant with trisomic pups in the middle of their pregnancy. When the pups were born, they reached developmental milestones such as grasping a rod, righting themselves and responding to tactile stimulation at the same time as normal mice (Obstetrics and Gynecology, vol 112, p 1242). “We were able to prevent a significant amount of the delay,” says Spong.
If this research leads to treatment and less termination, than I think it would be a blessing. I’d be interested to know how families with children with Down’s Syndrome feel about this study.
Image: Down’s Support
I am 20 weeks pregnant now and at our ultrasound the doctors let us know that our baby boy is exhibiting a sign of Down Syndrome. We will go full term no matter what, but we are proceeding to do more testing, just to put the matter to rest. It’s fascinating to think they’re making advances to alleviate the syndrome all together. Thanks for sharing.
Jennifer Lance says
Good luck ClothDiaperGirl. I have known some amazing people with Down’s, but you may end up with a “normal” baby after all. Be sure to go to the best for future testing. My friend had a horrible experience at a hospital that misread level 2 ultrasounds until she went to UCSF and found out her baby was fine.
Beware of all this “new science stuff”. Many times there are Press Reports that are either erroneous or just reporting very preliminary results.Only after long term clinical trials should you start to trust this stuff.
Our oldest child died of Malignant Melanoma in 1982 and there have been many reports of “cures” all have come to nothing.In the same year we had a baby boy who was a Downs syndrome baby.It took a long time for me to accept his downs. I looked at surgery etc to make him look “normal” ,but came to realize that he was himself, I was the one who had to change. When people talk of drugs and changes I wonder if they really want a normal child or a “normal looking ” child?
Lastly I would recommend any body to abort rather than continue with a downs pregnancy.You would be insane to continue. You have absolutely no idea of the pain, torture that you will put yourself through. Today there seems to be a “I can do it” and “I should be able to do it” complex. B.S. This is not something selfish,this is your life and if it goes badly it will affect your child very badly. My wife and I ultimately divorced. I’ve seen couples live together with no love, afraid to have sex in case “it” happens again, so all the love dies.Couples who are determined to be Dr.Spocks and make this kid the best possible.They push their Downs kids so much she was pulling her hair out.Parents solution ? Shave her head.
My son was a great wonderful kid, we raised him as normal as we could. Regular school etc and then a Group Home and his own job. We also went through two open heart operations and a heart pacemaker with him. Due to the blood thinner medication he had a fatal aneurysm at age 23 three years ago.
So if you are sitting and wondering what to do, think of what the future will hold. I loved him more than life but would never want to do it again.
Jennifer Lance says
Andrew, thank you for sharing your personal story.
It is true to be cautious of such results, as they are only being tested with mice currently and may not transfer to humans.
It is a very hard decission to make because on one side you wont want to have a child that will suffer and you as a parent will think will i get help financially for my child? so many questions will pass trough your mind. Then u will think ok this child did not as to be in my womb an it is already here and to abort it will be forever on my mind. So in that way i think they should take the responsebility and bring forth that child and just fight for the best.
MARY JANE LOPEZ says
IM VERY HAPPY WITH MY CHILD I JUST WISH PEOPLE WOULD UNDERSTAND MY CHILDS DISABILITY…THEY ALWAYS ASK ME IF I WAS TAKING DRUGS…OR IF MY HUSBAND WAS..I JUST SAY NO!!!! PLZ HELP IN GETTING MORE INFORMATION OUT THERE.THANKS=)
clothdiapergirl – something similar happened to us. The doctor said the baby’s kidneys were small which could be a sign of DS but after a month of waiting for the next ultrasound (and worrying and planning how we would handle a child with DS) when we went in for the followup we were told by the ultrasound tech that it’s common for boys to have smaller kidneys and there are 12 (or 13) indicators for DS and having one sign is not a reason to get too worried. Our son was born without DS or any other health issues. For us, it was good to face a very big fear and know how we wanted to handle the situation rather than ignoring it but I wish the doc had passed on more info and taken the opportunity to educate rather than just scare us.
My experience as an over 35 mom is that DS is the death knell for women who wait too long. From the first book I read through the ultrasound experience all I heard was downs downs downs. It’s hammered into us that it’s a horrible thing to have a child with Downs and being an older mom you’re HIGH risk and need to always be afraid . But the pre-screening is shaky, at best and there’s a huge lack of education for expecting parents about the entire subject.
I feel for you Andrew. I’m sorry you’re still in mourning. However, I think you should keep your “advise” to yourself. Something as personal as whether or not to abort a baby with Down’s syndrome is not really a topic for public blog discussion, is it? Seems more like a private one.
My first child, a son, was born with T21 last year. It was a complete surprise. After spending the first two months healing and morning the baby I expected, I finally pulled out of my depression and accepted the awesome kid I got. He is incredible. Milestones come a little slower than with a typical kid, but honestly, he’s a pretty normal kid. At 13 months, he signs and speaks words (around 15 total), crawls and pulls up, plays games me and and his dad and is a constant source of pure joy.
Prescreening is a joke. It’s a gamble no matter what your age. There are a lot worse things to be born with than Down’s syndrome. I feel lucky.
NW Mom says
As a parent of a five year old daughter with DS, I have to say that I agree with Kim. My daughter is capable of so much more than people expect of her. I don’t push her past her limits and I’m okay with whatever progress she makes, but I also won’t make the mistake of expecting less of her because of a diagnosis. There have been many advances in early intervention, and continue to be many. I also don’t think you can have any ability to predict what each individual child with DS will be capable of, nor what their health issues will be. There is a wide spectrum here, just as with any typical child.
I just don’t think it fair to state that a person should terminate or not. The statements made about parents having an “I can do it” mentality were hurtful words. I would want to try my best to raise my child with any medical condition, and DS doesn’t count as an off that list reason.
cedric scott says
i am doing a project over down syndrome and these people are really nice
Not to play Devil’s Advocate, but I kind of agree with Andrew. I don’t see bashing the “I can do it” mentality as an insult to parents. We’re all overconfident. Your child is born a little different, you go in headstrong and ready to deal with it, and the next thing you know it’s harder than you thought it would be and you and your husband or wife are fighting all the time.
A woman in my family had a son with Autism, and he tore the marriage apart. Her husband just couldn’t handle it, and now she’s left alone with a VERY difficult to raise child. It’s hard to date for her because having kids scares a lot of men off – not to mention having kids with developmental disorders.
I knew a kid with down syndrome for a short while before he unfortunately passed away. He was convinced that he was Wolverine and that he lived in the X-Men universe. I had to reassure him that I was not part of The Brotherhood and would not hurt him. Nobody took this kid seriously, ever. Nobody really listened to what he had to say because to them, it was all nonsense. It’s not fair to a child to have to live in a world where very few people are actually interested in them. It didn’t help that his deadbeat mom didn’t want to take the time to raise him and dumped him on his grandparents who absolutely had no clue how to handle him – I think that’s ultimately why he retreated into his alternate reality.
I refuse to get any womb testing done because I am very squeamish about the whole needle through my bellybutton thing, and it can cause a premature birth (you pierce the amniotic sac, you are asking for trouble) – so I’ll never know for sure until my baby is born…but to be completely honest, I would personally put a baby with autism or down syndrome up for adoption. I would rather give my baby to a family who has lots of experience with children with mental handicaps than to risk failing as an amateur at it. You can call me a bad future parent, but sometimes looking out for your child’s best interest doesn’t always allow you to keep them near.
As for terminating a pregnancy over it, I’m on the fence, but leaning towards Andrew’s opinion. The human gene pool is pathetically weak because we use our medical technology to defy nature’s Survival of the Fittest rule. There is a reason why cancer, heart disease, and mental handicaps/disorders are INCREASING. We don’t let nature take its course with our kind. We forget that we too are animals on this earth, and if we don’t allow nature to weed out the weak, we are most likely doomed as a race. It is sad, yes, to see a child or a loved one die – but going against the way of things has a terrible price. I wouldn’t deal with it any better if I lost my child to a genetic disorder, but I would understand that if it wasn’t meant to happen, it wouldn’t have.
My aunt died from an aggressive form of breast cancer a few years ago. They knew she would not beat it. The doctors still put her through the painful chemotherapy, the stressful treatments, and she still had to deal with those agonizing nights where she was so hungry but knew if she ate, she would just throw it back up moments later.
What’s more cruel in that situation? Letting someone die the way they were supposed to, or increasing the length of their suffering?