DD's friend

[Bama]

The baby had surgery to repair his intestines. Not sure to what extent they repaired it, but DD said he was also born without a rectum. She found out today that he also has a spinal abnormality and his heart is on the right side. Anyone ever heard of that? She said his face looks almost normal. We're happy to hear that for his mother's sake. Some of the images we saw when we did a search were disturbing. Doctors told her he might live a few weeks.
If DD will wait until Sunday to go visit them, I might have time to make a simple quilt.

[temom]

Bama, that is such a difficult situation. I am sorry for everyone. Your dd is going to need some extra hugs after she goes to visit her friend.
I think a pretty blanket would be nice if you don't have time for a quilt.

[sewingmom]

I have actually done ultrasounds on people with the heart on the right side of the chest. That is also one of the reasons a chest xray has to be labled as to which side is the patients left because there are rare individuals that have rt sided hearts and some people have a full set of reversed innards. This is called sidus inversus ( if I remember correctly) There is another name for the right sided heart only thing, but I can't recall it now. ( I have worked in x-ray since 1969)
The babe can be given an ostomey for the colon to empty into. I am sorry for the little guy and the mom. She probably needs lots of huggs. Your daughter probably will also after she visits with them.

[sewingmom]

Lori, here is a web site listing a support group for this sort of problem
http://www.trisomy.org/
This one is really good. It may be some comfort to the poor dear mother.
http://livingwithtrisomy13.org/


Here is a website with information on trisomy 13, It lists the right side heart as one of the findings among other heart defects.http://health.nytimes.com/health/guides ... rview.html

[Sancin]

Genetic defects, unless babe is grossly deformed (eg, hydrocephalus), cannot be picked up with ultrasound or maternal blood tests. Down's syndrome is the most common dramatic genetic defect. Fetal genetics can only be detected through amniocentesis, withdrawing some amniotic fluid from the mother's uterus during pregnancy, and then doing a genetic analysis. The sites Bridesmaid listed are good references. I cared for a little boy, years ago, with this disorder. I can't recall his age, probably about 6 years of age, he was very tiny and did not have many observable defects. While he was in an acute care pediatric hospital ward, he was in fact, a long term care patient. I seem to recall that he could not talk and had to be fed and was incontinent - his mental age seemed about 9 months as I recall. I suspect his size was due to some sort of heart defect as he was slightly blueish in colour. He was mobile, but not safe so was kept in a playpen near the nursing station during the day. And he was a very handsome child. At the time I recall thinking of several other children over the years that I knew of or cared for that had severe abnormalities and who were beautiful children. I remember thinking, God must have given them looks to make up for all the other problems they had. I don't recall any of them living longer than school age.

It is a tragic situation for parents and especially for a young mother with her own problems and probably not much experience with these sort of things or any idea of what she may be heading into....lots of personal care for many years, many types of surgeries and different opinions from many health care professionals as well as getting an education or becoming employed. Infants with organs born outside the abdomen can be repaired but they usually require special formulas/diets for a long time. Once I did a post surgical visit to a young mother who had such a babe who only had the oophalacele. She asked me to try and get her some support from social services as she was only allowed x amount of money for infant formula and the formula she required was very expensive. It took a very long time to get all the referrals and such arranged and as the mother was also a teen, she really didn't know how to go about in the 'system'.

[LeapFrog Libby]

All I can do is send prayers her way for her and her baby. That I can do !

[lendube]

Lori, how are the baby and mom doing? I was thinking of them last night.

[Bama]

He is doing much better. They got to take him home a few days ago. He still has a feeding tube but his mom is getting to give him a bottle as well, since he is trying to suck. She's been pumping her milk since he was born. DD and I haven't had a chance to go to see them at home yet, but hope to get to go by next weekend. I got to see lots of pics recently. He looks a lot different from normal babies, but is still beautiful. DD said he reminds her of what an elf baby would look like. He has pointy little ears and a large nose. Her friend hasn't mentioned what the doctors have told her lately about what kind of future he might have now, and DD does not ask. She just seems so thrilled to have him home.

[lendube]

I was almost afraid to ask. I thought maybe he'd passed away which might not have necessarily been a bad thing depending on how bad off he is. Poor little baby. And poor Mama. She sure didn't sign up for this.

[Bama]

Sorry, I've been meaning to update everyone but have only logged on long enough to scan over the boards for the past week or so. She named him Liam. She told DD she just wants to focus on enjoying him while he's here. She's really trying hard to take care of him even at 19. I was surprised they sent him home.