The Orr Family

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

Initial Backstory

Logan and I had been trying for our first baby for nearly two years. We were so excited when we found out in March that we were finally pregnant with a baby boy! But after receiving two "No call" results from the genetic testing, I was sent to a specialist at 18 weeks to get an early anatomy scan to make sure nothing was wrong. At that appointment, we received the devastating diagnosis of CDH. We were referred to the team at Children's Memorial Hermann Hospital, and six weeks later we traveled to Houston to meet the team there and get a complete evaluation. We decided then that it felt right to make a permanent relocation from San Antonio to Houston so the Memorial Hermann team could take care of our son. The last few weeks have been very stressful trying to coordinate a move, a new job for my husband, housing, and money matters. We are still trying to find a tenant to take over our San Antonio lease so we won't be stuck paying double rent. But things have been falling into place otherwise, and we feel confident that this relocation is the right choice for our family, and have faith that our baby will be okay in the end.

Update 9/30/25

Baby is still doing good so far! We are at 31 weeks gestation. There was a concern of polyhydramnios, but my fluid levels have been stable for the last couple of weeks, so hopeful that will continue! Only a few more weeks to go

Update 10/29/25

Induction date is scheduled for November 11! I had to get a amnioreduction a couple weeks ago since amniotic fluid volume got too high. But everything went well with that procedure. Baby is doing good for now. Drs are a little bit concerned about how small some of the valves in his heart are, but we will find out more once he’s born.

Update 11/30/25

"Walter Malosi Orr was born via c section on 11/12 at 5:22pm. He was immediately taken away to be intubated, and they could not get his oxygen sats up so he had to be taken to the nicu right away and I was unable to see him. By the end of the night he had to be put on ECMO, and around 12:30am I was finally able to see him for the first time. On 11/13 Walter had his diaphragm surgery. He turned out to have a type C defect and needed a patch to reconstruct his diaphragm. He was on ECMO for 11 days and was successfully taken off on 11/22. He has been doing extremely well on the ventilator and has been able to slowly wean down the vent settings and wean off of a number of medications. Walter has been doing so much better than expected and we are so extremely grateful for the positive trajectory he seems to be on!"

Update 1/4/2026

"Walter made it off the ventilator to CPAP on December 9th! He was able to wean down the settings quickly, and after four days they switched him to high flow oxygen. However, his oxygen sats kept dropping and they had to go higher and higher on the oxygen settings, until finally the decided to switch him back to CPAP. He seemed to keep struggling after the switch, and an xray revealed his left lung had collapsed and there was a buildup of fluid in his chest. The doctors decided to switch him to NIPPV settings on the CPAP machine which gives greater pressure of air flow, and that has seemed to work. Over the past week he has steadily improved, and this time we are weaning him a lot slower, but making steady progress."