What condition is this?

Published

My husband's friend just told him that his infant daughter has a rare disease that will cause severe mental and physical abnormalities.

She was born with a heart condition that had to be operated on immediately, and now doctors say she won't grow to be over 1 1/2 feet tall and will have mental disability similar to down's syndrome. :(

Any idea what the condition is called? I tried google, but didn't have much luck.

Up Vote Up Vote ×

Cornelia deLange Syndrome? Primordial Dwarfism?

Up Vote Up Vote ×

I asked my husband if maybe it was Cornelia Delange and he said that sounds right. Thanks so much Suesquatch!

Do you know if children with this syndrome require a lot of treatment? They are giving up the child for adption (it has been placed with a special needs family) because they say that it will need more care than they can give it. I thought that sounded extreme, especially since the mom doesn't work. But i had never heard of the disease, so maybe I'm wrong.

Up Vote Up Vote ×

http://www.news-medical.net/?id=21702

It does seem very extreme to me also, I wonder if the child will ever be adopted?

Up Vote Up Vote ×

http://www.cdlsusa.org/

A friend of mine has a son with this condition. There are levels, but it is never pretty.

Up Vote Up Vote ×
They are giving up the child for adption (it has been placed with a special needs family) because they say that it will need more care than they can give it. I thought that sounded extreme, especially since the mom doesn't work.

I know I sound extremely judgemental, but...

How horrible to give up a child because she wasn't born perfect.

Up Vote Up Vote ×
I know I sound extremely judgemental, but...

How horrible to give up a child because she wasn't born perfect.

Ditto...

But to play devils advocate... maybe they do not have financial means to care for a child who will require so much care.. so they'd rather her be adopted by someone else who can?

MAny people abort because their children aren't perfect... or recently many prents are giving up their older children because they are misbehaved... its no different... still sad but sadly no different.

Up Vote Up Vote ×
Ditto...

But to play devils advocate... maybe they do not have financial means to care for a child who will require so much care.. so they'd rather her be adopted by someone else who can?

MAny people abort because their children aren't perfect... or recently many prents are giving up their older children because they are misbehaved... its no different... still sad but sadly no different.

I hate that too - and for the ones who give up kids for not behaving...who is at fault when the child never learned how to act? I had a friend I used to call "the dog wrecker". She woud adopt a dog from the pound, let it run wild for a few months, and then when the behavior got out of control, she would take it back to the pound. Now people act that like with their own children - let them do whatever they want, and then just give up because the kids don't know how to behave. And those very same kids will be adults some day, and then what??? Do they expect manners and empathy and responsibility to just appear when the kids turn 18??? Thankfully, my friend loves her kids more than anything in the world and is a terriffic mommy - I don't think they will be going to the orphanage anytime soon... Sorry for the hijack!!!

Up Vote Up Vote ×

I feel the same way that you all do. I can't imagine giving up a child because it has a mental disability. But then again, i'm not in their shoes.

They already have another child, a little boy, who has been the ER 3 times due to passing out from head trauma. They say he fell. They were investigated for abuse each time. I'm starting to wonder if maybe they have thsi idea of a perfect child and if it isn't perfect, they don't want it.

My heart was absoutely broken when my husband told me about this. I couldn't beleive someone he knows is doing this. And that poor baby girl. Just when she needs her family the most, they are abandoning her. I cried about it last night.

So sad.

Up Vote Up Vote ×
I know I sound extremely judgemental, but...

How horrible to give up a child because she wasn't born perfect.

Cornelia deLange Syndrome results in children who are far from being born "perfect." There are multiple and severe physical anomalies, often multiple surgeries, and 24/7 care for the rest of the child's life.

Up Vote Up Vote ×
Specializes in Med-Surg/Tele, ER.
I feel the same way that you all do. I can't imagine giving up a child because it has a mental disability. But then again, i'm not in their shoes.

They already have another child, a little boy, who has been the ER 3 times due to passing out from head trauma. They say he fell. They were investigated for abuse each time. I'm starting to wonder if maybe they have thsi idea of a perfect child and if it isn't perfect, they don't want it.

My heart was absoutely broken when my husband told me about this. I couldn't beleive someone he knows is doing this. And that poor baby girl. Just when she needs her family the most, they are abandoning her. I cried about it last night.

So sad.

Frankly, I think they are doing the right thing. From a fourth-hand perspective, I really can't speak to the issue regarding the little boy, though it does sound very suspicious. Special needs children are at a high risk for abuse - if the parents already don't want this responsibility, it is best the baby go to a family that will love and appreciate her for who she is. Being a special needs foster home also means they already know the level of work she requires, no illusions there. Sure, if it were my baby I would not follow the same path. We don't do all the genetic testing during pregnancy, because it wouldn't change anything for us.

At least, I can certainly hope not. One never knows how we will respond when we receive such devastating news, but we can hope we will do the right thing.

Up Vote Up Vote ×
do you know if children with this syndrome require a lot of treatment? they are giving up the child for adption (it has been placed with a special needs family) because they say that it will need more care than they can give it. i thought that sounded extreme, especially since the mom doesn't work. but i had never heard of the disease, so maybe i'm wrong.

cornelia delange syndrome results in children who are far from being born "perfect." there are multiple and severe physical anomalies, often multiple surgeries, and 24/7 care for the rest of the child's life.

if they truly made the decision for the reason stated i commend them. it's easy to arm chair quarterback a family at a time like this. i can't think of a harder decision for a family to make that giving up a child for adoption. caring for a child with a devastating physical and/or mental condition is a much greater responsibility than raising a healthy child. as suesquatch stated, these children often require icu level care, at home, around the clock with little to no assistance. for some of these families it is much more than a monetary decision; they quickly realize that they are not mentally capable of providing such care.

years ago, when i worked neonatal icu we had a little girl in the unit who spent a considerable amount of time with us, remaining in the nicu until shortly before her 1st birthday. it took that long to find a place that would accept her. she was a child that had long been trached and was going to require life time mechanical ventilatory support. the mother visited on a regular basis, and clearly loved this little girl; but she knew that she was in no way capable of providing the care that her daughter was going to require. sadly, she made the decision to let her daughter go.

i never viewed this a mother who wanted to get rid of a less than perfect child. i always saw it for what it was; she gave her daughter up so that she could receive the care that she needed.

i have made many hard decisions in my life, but this is one that i am glad i never had to make.

Up Vote Up Vote ×
+ Join the Discussion