My baby sister is pregnant and found out at the 12 week scan that the baby has an Omphalocele (which is the intestines growing outside the body). She is now 16 weeks and they have confirmed it's an Omphalocele and did an amnio to find out if there are any genetic issues. She'll be almost 20 weeks by the time they get the information - and if it's something bad (Trisomy 18, etc) she thinks they'll term.
I'm freaked out for her and really worried about her having to term so late - when we had testing done for my first son they told me if we needed to term we'd have to go to another state because they won't do them here after 20 weeks.
So this is a two-fold question - do you know anyone that was diagnosed with a Omphalocele and kept the baby? Did the child end up "normal"? Also - do you know anyone that termed at the 20 plus week point due to medical problems? IF so - how did it go. Are they now ok?
I should add it isn't just the "intestines on the outside" - I guess there is another name for that - but this is also a similiar situation but most of the time fetus with the actual Omphalocele can have other birth defects - heart problems are fairly common - and of course if there is a genetic component that brings more issues up. So they know it isn't hte simple "just intestines" but they aren't sure to the extent of trouble otherwise. So they have to wait for the amnio and that will take at least 2 weeks - then they'll do another u/s to make sure the heart and everything else is ok. I'm just worried for her and wanted to get advice from people that have been there/done that. Thanks
I don't know all the particulars but one of my husband's old friends had a child born with her intestines on the outside. I didn't know there was a name for it. Anyway she is around a year old now and perfectly normal so far as I have been told. Ya know how guys are, don't really talk about such stuff.
You and your sister would be amazed at the medical interventions possible today. Our middle son was diagnosed with several heart defects before he was born. He basically only had 1/2 a heart (no right atrium, right ventricle, or tricuspid valve). They were not sure he would have blood flow to his lungs at birth. Termination was never an option for us and we hoped for the best. He had open heart surgery at 11 days old and again at 6 months. He is now 4 and you would never know he was any different. We went to hell and back with him--he really overcame some amazing odds! He will have one more open heart surgery this summer. I would encourage your sister to take it one day at a time. The prognosis for Omphalocele seems good. I know there are concerns for other defects. Once she has the full picture (after amnio) maybe she could go for a second opinion. Best of Luck!
I would think it is in God's hands and let it go. I think if the baby is alive and growing it is a non question. Taking the life of a child for a medical reason that might be fixable is not something I would want to do.
I have a friend who had a pregnancy going along very well and then the unthinkable happened. They did some test and it showed the baby's bones were not going to form, something about them not getting hard?, they decided to carry the baby full term and it was born alive. They got to hold their baby, name it, love it, everything, knowing it would not live very long they still did that. They were fully able to let it go and live with the loss without guilt and remorse. It was very hard for everyone of course but they felt they had to let the child have every moment it needed to live.
It sounds like they are doing everything they can to find out exactly what the condition of the fetus is. That is exactly what I would do in their situation. Only with complete information can they make an informed decision. Once they know as much as possible, they will need to make their own decision. Please support them whatever that decision might be.
It is not medically unsafe to term a fetus after 20 weeks. The only concern I would have is the more and more restrictive laws that are being put in place that interfere with a decision that should be only between the patient, partner, and their doctor.
I've never had to make that decision, so I can't be sure, but my feeling is that if I knew for sure that I was giving birth to a baby that was going to die from its abnormalities, I would have aborted. I certainly would not judge any person for making that decision.
One of my dear friends has a son who was diagnosed with an omphalecele in utero. He had to have a few surgeries but now is a healthy, happy, typically-developing one-year-old.
We had friends with a baby who had an omphalocele and numerous other problems. They carried baby Jaxton to term. He lived for 14 days; the one year anniversaries of his birth and death just passed. Their story is quite a powerful one - although it was heartbreaking, they weren't sorry for even a second that they chose to keep that sweet baby boy. Every second of his life was a miracle and a gift.
If you or your sister (or anyone else who reads this, frankly!) are interested in reading their story, here is the link to their blog, and Jaxton's story. They have an older son, and are expecting a baby girl now. :)
http://lisahusmann.wordpress.com/2010/10/11/its-an-extra-...
Take care.
I, myself, have not had a baby with this defect but a close friend of mine had her first with this problem. I don't recall the details entirely (it has been 16+yrs) but I will say she delivered her son as close to full term as possible. He remained in the hospital to have his intestines and such put inside his body. I do recall he was in the hospital for a long time but I will report he is a happy, active, normal developed boy. There where times she wanted him to have a belly button (kids are mean if you're even a little different from the rest) but I'm not sure is she ever did.
I have 2 friends who were told to abort their babies because of severe birth defects. That not being an option for them morally, they went full term and delivered their babies. Both babies turned out to need some medical care, but in the end have grown to be normal healthy middle-schoolers. Even when drs identify a problem, who know what the extent is? God created that life, who are we to decide "how bad it will be"? For me, I would always wonder, "did I do the right thing" by aborting. But to give my baby a chance, I can't imagine regretting that.
I've seen kids do well after having their omphalocele repaired. I'm a PICU nurse and we had a little girl in frequently for multiple repairs and skin grafts. She also had some respiratory issues because hers was so large. But she is a normal child otherwise. She walks, loves to go in the pool (was even able to prior to final repair), plays, colors, anything a typical child her age would do. Do they think there is something else going on, or just that the baby has an omphalacele? An omphalacele doesn't necessarily mean there are other problems (genetically speaking). I wish her luck and will say a prayer for the whole family.
My husband's cousin had a baby with omphalocele. She had him earlier than normal (not sure how early though), and he was in the hospital for 5-6 months after birth. Doctors did surgery on him almost right away, and it took a long time for him to be stable enough to go home. He's 5 now, and he looks and acts like a "normal" boy. We're not too close with them, but he doesn't seem to have too many medical issues now, but there might be some we don't know about.
I can't help you with the second part, sorry. Hope my info helped a little, and I hope your sister and her baby are okay. :)
My son was diagnosed with an omphalocele at 12 weeks gestation. It is my understanding that an omphalocele is a herniation but NOT an opening. My son's liver herniated through the abdominal wall into the umbilical cord. Calling it a hernia is also probably inaccurate as its not a rip, rather a defect in the formation of the abdominal wall. I was subject to a level II ultrasound which is essentially a more intense look at the other organs of the baby, searching for other possible defects such as heart defects as you mention. My son did have a hole in his heart early on in the pregnancy which had resolved itself by a later ultrasound. My pregnancy was monitored to the very end. A C-section was scheduled to avoid damaging my son's liver in the birth canal. He was operated on within 7 hours of birth. He will be celebrating his 8th birthday in about 2 weeks. By the way, we refused the amnio because down's syndrome and trisomy 18 don't usually correlate with omphaloceles.
What you describe for your sister's pregnancy sounds like gastroschesis where the intestines float out through an opening in the baby's abdomen. I don't know as much about this defect. Has she asked about in-utero surgery to push the intestines back in and repair the opening? If there's a hole in the heart, if it doesn't resolve, could it be repaired with surgery after the baby is born? What is the ultimate prognosis for the baby if there is another defect?
I am so sorry that your sister and you have to deal with this. I truly hope, with the miracle of modern medicine, that it all turns out well.
My understanding is that intestines outside the body is a very treatable condition with surgery.
