Jack Jensen's Blog: Daniel

Thursday, July 17, 2008

Daniel

I just found out that another CDH baby passed away. Daniel was born Dec 14, 2007 and passed away today. His parents have a beautiful photo collage on his blog. You can view it HERE

CDH is a really horrible birth defect. To follow these babies and then read about their passing is so upsetting. Part of my thinks that I can't imagine what their families are going through but then I also realize that it so easily could have been us too. It's like a ripple effect too. It doesn't effect just the baby and the parents. The brothers, sisters, aunts, uncles, friends, hospital staff and even strangers that follow our journeys are deeply affected.

Jack is our miracle. Despite all the hard work of researchers, surgeons and critical care teams the mortality rate of CDH still hovers at 50%. I am hoping for the day when there is a major breakthrough and no one has to watch their child go through such suffering.

1 comment:

amy said...: Thank you for sharing Seth and Daniel's stories Vic. It's such an amazing thing that we can form these virtual communities to provide support and commiseration during times that are so scary and isolating.

Are your boys home yet? I'm sure you could use the company! Stay well.; July 18, 2008 at 1:37 PM

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Jack's Diagnosis and Recovery

At our 19 week ultrasound Jack was diagnosed with CDH. One week later James and I went to Children's National Medical Center in Washington, D.C. for more extensive analysis. We had a fetal MRI and saw that his hernia was on the left side (the most common) and at that time his liver was 'up' or in his chest. His heart was pushed to the right in his chest and he had a normal sized right lung and a very small left lung (about 1/5 the normal size). Overall his CDH was classified as severe with a Lung to Head (LHR) ratio of 0.8. His echocardiogram showed that his heart was beating strong and there was no underlying congenital heart defect. His amnio was also normal. The prognosis was 20-50% chance of survival at birth. The struggle we faced with this diagnosis was that there is little correlation between prenatal diagnostic test results and outcome at birth. Some babies with mild defects do poorly and some with severe defects pull through and do very well. All we could do was try to be optimistic and hope and pray that Jack would be a strong baby and fight hard. On August 20, 2007 John Verner Jensen "Jack" was born by C-section at The Johns Hopkins Hospital. He weighed 6 pounds 11 ounces and was 20 inches long. Within hours of birth he was placed on ECMO (heart-lung bypass). He had a 10 day run on ECMO and went to his hernia repair surgery on this machine. He was missing 90% of his left diaphragm, had his entire stomach, spleen, and parts of his small and large intestines and liver in his chest and he required a gortex patch. Jack came out of surgery off ECMO but with the cannulas still in place until later that night. He had a really hard night after surgery and we nearly lost him. We were later told his blood gases should have been unsurvivable and that it was pure will and not medicine that saved him. After 81 days in hospital we brought Jack home breathing room air and needing only an NG (naso-gastric) feeding tube. After 27 days home he reherniated and we had to go back for emergency surgery at Johns Hopkins. His awesome surgeons literally patched him back up and after another 16 days in hospital he returned home on Dec 21, 2007 - just in time for his first Christmas. Since then Jack has tackled his eating issues and is NG-tube free! He does not require any medication. We are extremely grateful for his incredible medical team and all his friends and family for their support, kind words, thoughts and prayers.

Jack's CarePage chronicles his day-to-day journey from diagnosis to approximately 6 months old (before we started blogging). See the link below.