Caitlyn's Story

     

This is a story of love, hope and miracles. This is Caitlyn’s story.


WARNING: PROCEED WITH CAUTION - MEDICAL PHOTOS

This is a record of the management of Caitlyn’s omphalocele by using a technique called “paint and wait”. This is a conservative way of managing the omphalocele by allowing skin to grow up and over the omphalocele instead of operating immediately at birth. The reason we chose this way of managing it was due to the size of the defect (very, very large) and the risk of additional complications was much higher if we had chosen to operate immediately.

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Newborn: the omphalocele involves all Caitlyn's abdominal organs covered by a thin membrane
The membrane is covered with a plastic film to protect it during the initial few hours.
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1 day old: Michelle gets to visit Caitlyn for the 1st time. The omphalocele is wrapped and stabilised with a foam donut.
4 days old: Caitlyn was able to be extubated from the ventilator after only 2 days. She then needed CPap for about 2 weeks to help with her breathing as her lungs had developed very long and narrow.
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12 days old: 1st cuddles with Morgan
8 days old: 1st cuddles with Michelle. Caitlyn was able to come off her CPap for short periods of time.
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13 days old: The omphalocele was covered with silvadine cream and dressed once a day. The cream caused the membrane to turn opaque and yellow.
1 month old: the dressing was made up of melanin dressings and gauze bandages. By this time, we were doing all the dressing changes ourselves although it was a 2 person job.
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Caitlyn spent a total of 9.5 weeks in the Newborn Unit at Waikato Hospital and a further week at the Mothercraft unit with Michelle living-in. During her stay she spent 2 days on a ventilator, 2 weeks on Cpap, 2 months on TPN feeding, became septic on 2 occasions, and was finally allowed home on the 16th July 2004. At this stage. she still required a feeding tube (naso-jejunal) which pumped milk continuously into her.
5 weeks old: the skin had started to grow up the side of the omphalocele.
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3 months old: the omphalocele is almost completely covered in granulation tissue (bright red). The skin is still only a few cms up the base. The green bit at the top is a scab that later came off.
Almost 4 months old: the omphalocele still contains the whole liver, spleen, and stomach. Some of the intestines have returned to the abdomen.
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4 months old: the scab has come off and the omphalocele is completely protected by granulation tissue and skin.
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11 months old: the omphalocele is completely covered in skin, but the size has not changed significantly in the past 7 months. Caitlyn has had a further operation a month previous to repair bilateral inguinal hernias. At this stage we had not used any form of compression wrapping to try and reduce the organs back into the abdomen.
Almost 12 months old.

 

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We started using coban bandages to compression wrap Caitlyn's tummy. These photos show the progress made in reducing the size of the omphalocele by compressing the organs back into her abdomen. These photos were taken over a period of 3 months (12-15 months of age).
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Almost 14 months old: we had been wrapping for almost 2 months. You can see the large change in size.
14.5 months: the omphalocele continues to shrink.
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16 months: the omphalocele can now be wrapped completely flat. All that remains out is Caitlyn's spleen and a small bit of liver, the rest of her organs have gone back inside her body.

 

 

Caitlyn had her one and only major operation on 17th November 2005 at 18 months old. The surgeon was able to close the muscle fascia without the use of additional mesh and has left her with a very tidy horizontal scar. She will not need any further operations until she is older when we may choose to create a belly button for her!

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1 week post –surgery
6 weeks post-surgery