Zack's omphalocele at birth.  The sac is very fragile.  The spot that looks a bit different is probably exposed bowel wall.  (The tube in his mouth sucked air out of his stomach to prevent any pressure on fragile sac.  It was removed after a day.)
Zack was just a few days old here.  The sac has toughened and become opaque with Silvadine applications.
One week old and home from the hospital!  The lump on his tummy is the omphalocele and many layers of foam and bandaging protecting it.
One month old.  He likes to have his back massaged when the bandaging is removed.
Two months old.  You can see how "tall" the omphalocele is.  Also notice the skin beginning to grow up the side of the omphalocele.
You can see why there's such a big bump under his clothes.  Here is the foam cap that protects his omphalocele so we are free to cuddle with him.
Underneath that foam cap are many layers of bandages.  The blue foam supports the sides of the omphalocele so that it doesn't flop over.
Another two month old picture.  You can see all of the different parts of Zack's dressing.  The omphalocele started to flop over Zack's chest.  An Occupational Therapist at Childern's Hospital solved this by making a support out of a blue foam strip, a foam wedge, and another blue foam strip.
A foam cap is placed on top.  This was smaller than the ones used previously because the omphalocele is actually shrinking.  We then wrapped an Ace bandage around everything to provide gentle pressure to encourge everything to go inside of his abdomen.
Three months old.  You can see that there is skin over half of the omphalocele.  (Since the omphalocele's sac was intact, we could give him baths.  We were careful not to submerge the omphalocele.)
When Zack was four months old, we were able to "wrap him flat"!  He looked completely normal when wearing clothes.  Over the past month, we were more aggressive with wrapping him.  We cut down the blue foam strips and then removed them as the omphalocele got smaller.
Another photo at four months.  This is the unwrapped omphalocele.  (The measurement is centimeters.)  The pink on the uper left is skin.  You can see the skin growing up the bottom of the omphalocele.  The white part on the right is the gauze used to tie off the umbilical cord.
Another view of the omphalocele at four months.  On the left is the new pink skin.
Zack at five months old.  The omphalocele is tiny!  Everything is inside his abdomen. Skin is still growing over his omphalocele, and once a day we put Silvadine on the part without skin.  We put two types of gauze bandaging on top of the omphalocele and then wrap an Ace bandage around his middle. 
Zack was born with a giant omphalocele (containing at least some of his liver and bowel). Fortunately he had no other defects and no other problems.  He was in the ICU for only two days, and we were able to take him home a week after birth.  He was first breast-fed when just two days old, and he's been eating solid food since he was five months old.

Two hours after he was born, he went to Children's Hospital and Regional Medical Center in Seattle.  Many babies with giant omphaloceles have surgery right after birth, but Children's Hospital's approach ("Paint and Wait") is more conservative.

"Paint and Wait":  Twice a day, we covered the omphalocele with Silvadine, a bacteriostatic burn cream which toughens and protects the sac.  We then wrapped it in gauze and foam supports.  An Ace bandage was wrapped around his abdomen to push the omphalocele's contents back in where they belonged.

When Zack was 7.5 months old, our pediatric surgeon decided that Zack's abdomen was large enough to surgically pull the muscles together.  This was successfully done on 23 September 2002, and Zack even got a belly button!  We're thrilled!  A picture of his new tummy has been posted at the bottom of this page.

We are happy to talk with anyone expecting an "O" baby about the "paint and wait" procedure. One woman's surgeon agreed to try paint and wait after seeing Zack's results, and she and the surgeon were thrilled with the child's outcome. 
All About Zack's Omphalocele
(Updated:  05 July 2010.  Zack's current age:  8 years.)
Omphalocele Photos
We have come a long way since the inital omphalocele diagnosis when Mandy was 15 weeks pregnant.  We very badly wanted our baby to be healthy and whole, and we worried about what would happen when he was born.  Our worries have evaporated, and we have been very happy with Zack's treatment.

We are incredibly grateful to the professionals at Children's Hospital not only for their devoted service but for their compassion. 

And we thank God for being with us every step of the way.  We have been blessed by the prayers of family and friends and even the prayers of people that we don't know.  Zack's full name is "Zachariah", which means "God has remembered".  We know that He always remembers our precious little boy. 


If you have questions, please
email me
Or contact the Surgery Deparment at Children's Hospital: (206-987-2039).

The omphalocele at six months.  (The measurement is centimeters again.)  Skin has almost completely covered the omphalocele now.  It really looks like a very large belly button.
Articles:
The surgeons at Children's Hospital published an article recommending this conservative treatment approach.  Here is a link to the abstract:  Initial nonoperative management and delayed closure for treatment of giant omphaloceles.  The article was published in the November 2006 issue of the Journal of Pediatric Surgery. 

The initial article on this method written by surgeons at Children's Hospital:
"Nonoperative Initial Management Versus Silon Chimney for Treatment of Giant Omphalocele" by Jed G. Nuchtern, Richard Baxter, and Edwin I. Hatch, Jr.  It can be found in the Journal of Pediatric Surgery, Vol 30, No 6 (June), 1995: pp 771-776.  Click here for a link to the abstract.
Zack is 10 months old in this photo.  When he was 7.5 months old, his surgeon at Seattle Children's Hospital performed the closure surgery and Zack spent 4 days recovering. He has been right on track for all of the regular baby milestones (crawling, walking, etc.).

The long incision line is the omphalocele closure. Lower on his abdomen Zack's surgeon created a fake belly button by cutting a flap out and rolling it into an open tube (it looks like a "C").

Zack spent 7 days in the hospital at birth, 4 days after his surgery at 7.5 months, and went to a dozen or so clinic visits, but now he's done.
These two pictures were taken three days before Zack's surgery when he was 7.5 months old.

The omphalocele hasn't changed much since the last photo.  You can see that it is higher than a normal belly button.

The dark spot in the center is part of the sac that skin still has not grown over.

You can also see the gap in his abdominal muscles.  The gap makes a teardrop shape.
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We shared our story with an expectant mom when she contacted us before her daughter, Mackenzie, was born.  She used Zack's site and the journal articles to convince her surgeon to try "paint & wait" with excellent results.  Her surgeon said that he will definitely use this method again.

-- Omphalocele Support Group page:  http://www.omphalocele.com/ seems not to exist anymore, but the EmailMOOs Yahoo Group is available: http://health.groups.yahoo.com/group/EmailMOOs/.