CDH International’s featured patient of the week is CDH survivor Haze Godwin. Haze is the son of Jeremy and Kalen Godwin and they had this to share about their son’s courageous battle with CDH:
“We found out at our 20 week anatomy scan that Haze had left-sided CDH. That was just the beginning of our nightmare.
We live in a small town in Georgia and our local hospital isn’t equipped with what Haze would need once born (NICU, ECMO, etc.). We chose to deliver in Jacksonville, FL at Wolfson’s Childrens Hospital with a scheduled C-section at 38 weeks.
On June 4, 2019, at 8:10am our little fighter was born, weighing in at 8lbs, 7oz. I barely caught a glimpse of him as the surgeon held him over the curtain before he was handed over to the NICU team, where they intubated him immediately. He was put on ECMO 3 hours later, where he would remain for the next 22 days.
Haze had his CDH repair at 24 hours old. They used a Gortex patch to serve as a diaphragm since there was no left diaphragm. They attached the patch to whatever they could find- ribs, Aorta, esophagus, etc. He ended up with stomach, bowel, spleen, gallbladder and 30% liver in his chest. The surgeon later told us that Haze only had 16ml of lung tissue at birth and he was by far the worst case he had ever seen (not a title to proudly hold).
Along with having very little lung tissue, Haze’s tracheal rings didn’t form which allowed his airway to collapse without the endotracheal tube. Also, his right lung (the bigger of the two) also collapsed without the pressure from the vent. They called both of these things; tracheobronchomalacia. In order for Haze to grow and develop more like a normal 3 month old baby we decided to consent to surgery for a trach. We really didn’t want this for him but we wanted what was best. This was ultimately the hardest but best decision we could’ve made.
Haze also had pretty severe pulmonary hypertension, which accompanies CDH in most cases. That was the main problem keeping us from going home. Our cardiologist suggested Remodulin, a subcutaneous catheter that continuously administers the medication into Haze’s body. After several battles with insurance we were finally able to get Remodulin and were discharged several weeks later, after being hospitalized for 7.5 months. We were very anxious and frightened to be taking our medically fragile son
home but we were so ready for our family to be under the same roof.
Haze was sent home on 1/20/2020 and unfortunately, we ended up flying him back to Wolfson’s within 36 hours due to Rhinovirus and pulmonary hypertension crisis- his Remodulin site went bad. This time around we were sent to PICU where we remained until 3/17/2020. They treated him and made vent weans before sending us back home. We really felt like we were ready to bring him home this time, there was more peace, and Haze was ready to be home as well!
Haze has been home ever since discharge from the PICU, minus overnight stays for procedures. He is more than thriving! When he was discharged in January his vent PEEP was at 14, they never really send kids home on that high of a PEEP but they knew that’s what his lungs needed to keep them open due to the bronchomalacia. We are currently at a PEEP of 7 and he is being weaned off the vent! Pulmonology says he’ll be completely off the vent during the day by the summer! Haze has had a total of 15 surgical
procedures to date.
We love sharing our story and Haze’s testimony whenever we get a chance. We hope that what all he has been through inspires other parents. Although things may look grim right now these babies are fighters and resilient. God has been by our side since day one, Haze is an inspiration and proof of God’s mercy and grace. With all he has been through he is the sweetest and happiest child. He is now crawling, pulling up/ standing and we know it won’t be long before he is running after his big brothers, Easton and
CDH has caused our family tremendous amounts of grief, pain and heartache but what CDH hasn’t done is WIN!
“I will give thanks and praise to you, for I am fearfully and wonderfully made; wonderful are your works and my soul knows it very well.” Psalms 139:14
We share updates of Haze on his facebook page, “Haze Godwin”.”