Beginning of the Journey...

My son, Harrison, was born on November 24, 2009 at 35wks and 3 days at Medical City Children’s Hospital Dallas. Harrison was born with a giant Omphalocele which contained his liver and his intestines.


Harrison was born premature and he had problems with his lungs, breathing, as well as a few other issues which resulted in Harrison staying in the NICU for 9 weeks 1 day. He was sent home on January 27, 2010 with Oxygen support (small amount .3L) and a NG tube as he has not mastered nipple feeding.

At approximately 12 weeks gestation, we found out that our baby was going to be born with a giant Omphalocele and immediately began a battery of test including an Amniocentesis (we found out it was a boy), Microarray, Beckwith Widderman screening, etc...   All of this in order to rule out any genetic/chromosomal abnormalities. All the test came back negative for any genetic/chromosomal abnormalities.

The plan for Harrison once he was born was to immediately go into surgery (within hours) after birth and “fix” the Omphalocele. However due to the additional complications (listed above) that was not possible. At Medical City Children’s Hospital in Dallas we adopted the "Paint and Wait" approach used with other children. This approach included dressing the Omphalocele twice a day with Silvadene cream (used on burn victims). The cream toughened the Omphalocele and protected it. We then wrapped it in gauze and plastic wrap and for the first 8 weeks we also protected it with a foam support. Once the Omphalocele had toughened and a scab had formed we stopped using the foam support, just used gauze to wrap it, and applied a “sleeve” to keep the dressing in place. Due to Harrison’s complications with his lungs and ability to breath we opted not to dress the Omphalocele with ace bandage (as they do with other babies) so that we did not place any more pressure on his lungs.

We continued with the Silvadene dressings twice a day and slowly the scab fell off revealing new skin underneath. On May 2010, we reached the two milestones necessary to go into surgery:

1.  The entire scab has fallen off and we have new skin completely covering the Omphalocele area. 
2.  Harrison has grown enough to be able to tolerate having the liver and intestines back inside.

On May 21, 2010 Harrison had surgery to repair his Omphalocele.  The surgeon had to use mesh as his abdominal muscles were not long enough to suture them together.   He was in the hospital for 2 weeks and then came home. 
 
For two months, we continue to work on getting Harrison healthy and gain weight. For "O"mphalocele babies this is not an easy task.  In July Harrison developed a infection and had to go back into surgery to remove the mesh. We are taking it one day at a time building up his immune system, weight, and preparing him for his next surgery (G-Tube and Bilateral Inguinal Hernia repairs).