
The Smith-Adrian Family
Baby Tafari
Relocated from Holly Springs, NC to St. Petersburg, FL (665 miles)
Scroll down to see updates as the Smith-Adrian family progresses in their CDH Journey! (All updates are written and given by parents with consent)
Update 7/3/24
My family and I learned we were pregnant in September 2023 at 4 weeks gestation. We had our first ultrasound in the 5th week and saw that we were having di di twins. We were excited and overwhelmed at the same time. We decided to do early genetic testing and it came back atypical finding. This could mean something or nothing, so we opted to do an early anatomy scan. During our 17th week we learned Baby A (Tafari) had CDH. This turned our lives upside down. We were distraught. I had seen CDH before in practice, but never did I think it would affect me directly. Once I got over the shock I started researching CDH, facilities that treat CDH and support groups. Based on the outcomes listed by John Hopkins All Children's Hospital and patient testimonials we opted to relocate to St. Petersburg, Florida at 34 weeks. This meant I had to stop working earlier than I had planned. I do not have any maternity benefits beyond short term disability, but will be staying in St. Petersburg for at least 12 weeks. The grant will assist with general finances and medical bills. Thank you for all your love and support!
Update 7/23/24
Tafari is still on ecmo. We had started weaning and he had a pulmonary hemorrhage today. This is a big setback. He is on medications for his pulmonary hypertension and we have seen some improvement with his heart.Â
Update 7/28/24
Tafari had to have another surgery this past Thursday. They found a pulmonary sequestration via a CT scan this past Wednesday. They think it was the root cause of his excessive pulmonary hypertension.
Update 8/22/24
Tafari is still intubated. They are weaning the vent. Hopefully he will be off it soon. His tube got displaced two days ago after he coughed. They did a bit of CPAP and he did well, but they did reintubate him. They said they want a controlled extubation. I did get to hold Tafari for the first time two weeks ago.
Update 9/27/24
Tafari had a second unsuccessful extubation. He was wretching , gagging and vomiting even though he has never consumed anything by mouth. He had a bronchoscopy and an esophageal gastro duodenoscopy. It showed severe tracheomalacia and a wide esophagus. He had a nissen and g tube placed last Monday. They noted he has a central CDH as well. he has recovered well and has started receiving breast milk. He looks really good. Tafari looks like he feels a lot better.Â
Update 11/2/24
Tafari is still intubated despite having a tracheopexy, Nissan and g tube. We are trying an anti-inflammatory treatment to see if it will help.
The Smith-Adrian family's monthly grants were discontinued. Prayers go out to them on the rest of their CDH journey!
