Just a few months after getting married, we got pregnant with our first child. Naturally we were delighted.
Unfortunately at our 18 week routine ultrasound scan, we received some devastating news… our baby was diagnosed as having a rare and serious condition called an omphalocele. This is a random event occurring in approximately 1 in 5000-10000 pregnancies where the abdominal organs do not return to the abdomen in the first 8 weeks of gestation. Caitlyn’s liver, stomach, intestines and spleen had all developed outside of her body in a sac.
The prognosis was considered poor with the chances of additional problems such as chromosomal problems and cardiac defects considered significant. Termination was a considered a reasonable option and suggested by our doctor.
Fortunately, we had faith in God, immense support from family and friends and fellow medical staff, an incredible web-based support group (www.omphalocele.com) and hundreds of people (unknown to us) praying for our precious daughter.
Caitlyn was born by emergency C-section at 37 weeks gestation on 29th April 2004. She spent close to 10 weeks in hospital and came home on a feeding tube, but otherwise well. She only had very minor surgeries while in hospital to repair the omphalocele sac at 3 hours old, and to insert a feeding line at 4 weeks old.
We chose to manage Caitlyn’s omphalocele conservatively using an approach known as “paint and wait”. This involves painting the omphalocele with silvadine cream and waiting for the skin to grow up over it. The organs are returned to the body by use of compression techniques and bandages. The skin took about 6 months to cover Caitlyn’s omphalocele, but we had to wait until Caitlyn was 11 months old to start compressing it. All her organs (except her spleen) returned to her abdomen within the space of a few weeks.
Caitlyn had her one and only major operation at 18 months where the surgeon repaired her tummy and closed everything up, leaving her with just a rapidly fading scar.
Caitlyn is now a happy and thriving 2 year old with her fair share of personality and cheek! Despite her very rocky start to life, she has continued to astound us all by reaching and exceeding all of her milestones and bringing joy and delight into our lives.
We have been blessed by God to be a part of the miracle that she is. We hope that you will gain encouragement and hope from Caitlyn’s story.
“For you created my inmost being;
You knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
Your works are wonderful, I know that full well.
My frame was not hidden from you
When I was made in the secret place.
When I was woven together in the depths of the earth,
Your eyes saw my unformed body.
All the days ordained for me
Were written in your book before one of them came to be.”
Psalm 139: 13-16
We would like to acknowledge the wonderful support and expertise provided by the nursing and medical staff at Waikato Hospital newborn intensive care unit, and especially Dr Stu Brown (Paediatric surgeon), Dr Phil Weston (Paediatrician) and Gem Williams (Charge nurse). We also acknowldege the wonderful support provided by the NBU and paediatric homecare nurses, district nurses (Hilary), and Visiting neurodevelomental therapists.
For further information please Contact us