The Harris Family

Scroll down to see updates as the Harris family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Update 7/2/24

During our 20 week anatomy scan we were told that our son has CDH. The ultrasound tech and doctor in New Jersey both told us that we needed to see a specialist either in NYC or Philadelphia because New Jersey does not have the proper equipment for  CDH babies. Immediately after that appointment we scheduled an appointment with Children’s Hospital of Philadelphia for extended testing. During this appointment we had an MRI, detailed Ultrasound and Echo done on baby's heart. After a full day of testing we were told that our son was categorized as “moderate” LCDH and this birth defect appeared to be isolated. His spleen, bowel, stomach and left lobe of his liver is up in his chest cavity. We were able to meet with the surgeons, neonatologists and doctors to better understand the plan that is put into place once baby boy is born. Scheduled induction date is Aug 1st 2024.

Update 8/10/24

As promised, I told you I would update you with our journey. Baby boy was born Aug 2, 2024 at 11:09AM. The first hour he did excellent but the honeymoon phase did not last long. He was unable to tolerate any of the machines so he ended up going on ecmo :( we are currently on day 8 with ecmo and he seems like he is holding steady for now. 

Nico Donald Godwin  6lbs 4 oz

Update 8/22/24

We have repair surgery aug 14th & we came off ecmo the same day. We are holding steady on the oscillator. They lifted the paralytic today & tried the conventional ventilator but he wasn't ready for it yet. 

Update 9/24/24

Nico is doing good he is still on conventional ventilator and we are working on weaning the nitric for his hypertension. Once that is weaned down we can try to extubate! We are up to full feeds with a NJ tube. So our next hurdle is extubation