omphacele

I am a student nurse,I had a young patient the other day who was born with an omphacele. I am trying to find some research on this condition and on the various ways that it may be corrected. I was wondering if someone might be able to explain it and the procedures or if they could point me in the right direction to find some detailed research. Thak-you.
lisajay

[nurse12hr]

(Helps if you spell it correctly when searching the web, LOL!)
Found this for you:


"What is an omphalocele?

An omphalocele is a congenital (found at birth) malformation in which variable amounts of abdominal contents protrude into the base of the umbilical cord. As the fetus grows in pregnancy, the intestines grow and get longer and project from the abdomen into the umbilical cord. This growth is taking place from the sixth to the tenth week of pregnancy. Normally the intestines return rapidly into the abdomen by the eleventh week of pregnancy. If this fails to happen, an omphalocele is present. It is important to remember that you did not do anything to make this happen. However, more than half of all infants born with an omphalocele may have other birth defects. Some of these defects may be serious.

What does an omphalocele look like?

An omphalocele is covered by a clear sac or membrane through which the umbilical cord is inserted. The sac may contain only a small loop of bowel or most of the bowel and other abdominal organs. If the sac ruptures, the abdominal contents move through the opening in the abdominal wall. The abdomen is smaller than usual making replacement of the abdominal contents more difficult.

How is an omphalocele treated?

Surgery must be delayed until the baby is doing well if the omphalocele sac is intact. Small omphaloceles are repaired immediately to prevent infection or tissue damage. Larger omphaloceles may require gradual reduction by enlarging the abdominal cavity to accommodate the intestinal contents. A Silastic (plastic) pouch is placed over the abdominal contents to contain the bowel and aid in reduction until surgical closure is possible. When the abdominal contents have returned to the abdominal cavity with the aid of gravity, the opening is surgically closed. Returning the abdominal contents into the abdominal cavity can take up to ten days. The baby is usually on a breathing machine (or ventilator) during the time it takes for this return. Non-operative treatment involves the application of Silvadene cream to toughen the sac. Surgery is postponed in these cases for 6-12 months to allow the abdominal cavity to enlarge as the baby grows. If the omphalocele ruptures, this is a medical emergency and surgery would be performed immediately. Complications from omphalocele include infection, rupture and intestinal obstruction. Should you have any further questions, please do not hesitate to ask any member of the Pediatric Surgery Team.

Where can a parent get help and talk with other parents about omphaloceles?  

There is a new web site called www.omphalocele.com which is owned by a group called Mothers of Omphaloceles (MOOs). The site serves as a support group, a source of non-technical information, and a gateway into the personal websites of many MOOs and omphalocele kids."

[ANUDD]

I read in one of the notes that " about half of the infants with omphacele, might have other defects, some of which may be serious"

I would like to know:

- What kind of defects are we taking about ? Can they be cured ?

- If detected during the early stages of pregnancy (14th week or so), is it worthwile to continue the pregnancy ?

[TanteMilly]

Hi

Last July, my husband and I had to make the awful decision to terminate our pregnancy at 20 weeks. Our precious little boy had a giant omphalocele (his stomach, small intestine, large intestine, liver, spleen etc. etc. was outside of his abdomen in a sac). We would have continued on with the pregnancy but there were many other things wrong. There were no genetic abnormalities, but my placenta was immature (many subchorionic hemmorages), he had a nodule in his brain, his lungs were half the weight they were supposed to be, his esophagus was wrapped around one of his organs and the doctors were pretty sure his case would have been very difficult to fix.  We did spend time with him after he was delivered, and although the omphalocele looked very scary, he was very beautiful and holds an extremely important place in our hearts. I am now pregnant again, 22 weeks, and our new little boy looks perfect on the ultrasounds (he has a little angel brother looking out for him in heaven!). I'm still torn to this day, and when my due date passed in November, I was devastated. I wish you the best and if you need to talk, please don't hesitate to write back.

Shelley

[Share Bear]

I have a dear friend who is currently pregnant and her baby has omphalocele.  She is going next week to see another specialist and is composing a list of questions to ask the doctor.  If any of you can suggest any questions you think would be helpful I would appreciate it very much.

For now we are doing lots of praying and lots of research.  She was originally due in December, however the doctors are going to take the baby in November.  This is her fourth pregnancy.  Her previous three were healthy pregnancies and healthy babies.  

Again any helpful advise would be appreciated.

Best of luck to you all and may God bless you!

Sherry

[Narda]

I wish your friend all the best wishes as I have a 5yr old girl born with omphalocele, she has had 2 surgeries and she is doing fine.

[BearHitch]

While researching this, it might be worth your time to also research gastroschesis.  My DS was born with gastroschesis, and when the initially found it on ultrasound, we were advised that it could be this... I can't spell it so I just won't  :)  Anyway, thankfully he had gastroschesis instead as we were told that if it was the other one there was a high chance there would be other defects as well as it was a chromosome error as opposed to the abdominal wall not fully closing and therefore allowing intestines to protrude.

[Narda]

Geeps is another good website but a a bit slow. Their are a lot of gastroschesis cases and a lot of surport. The Exomphalos part is very slow which is what i am looking for as i wish to make contact with older and adult exomphalos people to get intouch with, to find out more imformation for my daughters furture.

[Narda]

GEEPS has had an over haul and is starting fresh again, and is a lot faster now. So hope to hear from other parents and people with omphaceles to gain more imformation.

[GDMS]

Hello;
My wife is 11.5 weeks pregnant and yesterday the doctor found that the baby has an omphalocele. Evidently We are trying to learn as much as possible about this and its consequences and after a lot of reading I haven’t been able to understand if he/she will be a normal children,  a normal adult.
If it just omphalocele and if its surgery is successful will he/she be OK?
If it is not just  omphalocele which are the most common other defects the baby could have?

Thanks a lot;

Guillermo

[Jan1961]

I have a beautiful 21 year old daughter who was born with an omphalocele. She had 3 surgeries to repair the opening and the doctors said she was very lucky because she had no other organ defects. She is my miracle from God. I thank all the staff who took excellent care of her as well. Now my question is she came to me recently wanting to know if she would be able to get pregnant or would she be a high risk? I see no articles supporting this subject. Can you please give or find me more information.         Thank you,
                                            Janet

[Narda]

I recomend you get on to GEEPS as someone would be able to help you. I have heard of other who have successfully had children, I would recomend she speak with doctors as well. My daughter has her abdoninal aorta in the front so I do wonder the same for her in the future as she is only 6. But I wish your daughter the best and do let us know how she gets on as, has she had any ongoing affects from the exomphacele.

Guillermo,
Wish you both all the best as this is a hard time for you both, Every case is differnt, we were very lucky as she has had only little going problems and 3 weeks in hospital and 2 surgeries. Some have heart defects and infections,food issues and so on.The doctors gave us the worst case scenario, do look into GEEPS a lot of good outcomes.

[kaz944]

My son Matthew is 6 this year.  He spent the first 5 months of his life in hospital with a giant exomphalis(this is other word for it.  We had to wait for skin to grow over, he then had a daily dressing done and was fed by nasal gastric tube for 2.5 years, As time for his closure op came closer he wore a corset too to get his insides ready.  At age 3 he had his closure op and our surgeon Mr Davis at Yorkhill in glasgow is a god for how well his op went.  He managed to get muscle over too so a lot safer for Matthew.  No further problems have been experienced by Matthew, it is hard to believe he was nasal gastric tube fed as he now eats like a horse.  He is a bit smaller than other children his age but was 7 weeks early too but apart from that he is a very healthy happy little boy.  These children are very special and real little fighters.  

[heatherana]

I was born with an omphalocele along with other birth defects.  I also had 2 holes in my heart (one in upper and one in the lower chamber) and a cleft lip/pallet.  That was in 1980 and I am now 29 years old, am a missionary in Costa Rica and am 7 months pregnant with my first child.  

In the beginning, the doctors only gave me a 30% chance to live.  I was in and out of the hospital until I was 4 as they performed 3 surgeries to correct the problems.  When I was 4 years old, the doctors went in to do one last surgery to correct the holes in my heart, but they could no longer find the holes.  God had done a miracle and closed the holes in my heart!  My parents call me their walking miracle child.

I did have one more surgery when I was 15 years old to take bone from my hip and put it in my mouth so I would not loose any teeth from the cleft pallet.  And, I have not lost and teeth at all!  

I have not really had another other serious problems due to the birth affects.  I have led a perfectly normal life playing soccer for 8 years when I was younger, marching band for 7 years and have traveled around central America as a missionary.

I want to encourage all those parents out there that are getting news of this birth defect that their child can also be healed and lead a perfectly normal life.  Medical technology has advanced so much in the last 29 years.  And, God is still the same God yesterday, today and forever!!

[S2075]

Thank you all for your information and stories. I am a 31 year old female who was born with omphalocele(minor I am assuming) I did not have any other birth defects or health problems to this day.(knock on wood). I have lived a healthy and normal life and was just looking for info on any women who have had children after being born with this. The regular family doctors do not know much about omphalocele so it is a little difficult to ask them questions and have never had to see any specialists. Your stories were so helpful and inspiring to me. Thank you!!

Steph

[Shoranda]

My daughter is a TALL 7 years old. She was born with an omphalocele on Dec. 17 with a head FULL of HAIR. She also has a benign heart murmur that has closed smaller over the years and is being monitored annually.

She had 1 surgery when she was 5 days old where Cooks Children Medical (Ft. Worth, TX) put everything back in-place & made a belly button for her. She recovered from her surgery quickly: however, she REFUSED to drink her bottle. I mean, she would CRY OUT bloody murder. So, she remained in the NICU for 1.5 until she was released.

I was her personal nurse, considering my experience is in dental and her Dad medical....I was elected and shown by nurse how to insert the G-tube through her nose.

At 4 months, with prayer, variety of Platex Nipples and fresh fruit juice squeezed in the mouth....began drinking her bottle with NO Problem!

To this day........she eats E V E R Y T H I N G all the time!!!! I tell everyone that she is making up for lost time. LOL!!!

[shanfit]

I have been thinking about having a baby. I am 32 years old and was also born with the liver on the outside of my body. I read your comment and it has given me hope to continue my road to having a child. I have just started doctors appointments and am concerned with my abdominal area as the baby grows. Have you heard of the doctors repairing before of after the baby is born the abdominal area? Just concerned for my health....
Shannon