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The Brown Family

Baby Rhiley

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


When I heard the words your baby has CDH from the doctor on 5/23/22, my heart shattered. I had never heard of CDH before. It’s not something that is talked about when you go to all of those prenatal appointments. It’s not something written about in those pregnancy books you buy. Hopefully sharing Rhiley’s story can help inform others and maybe even bring comfort to someone who may have had the same diagnosis. 


1 in 3,600 babies are diagnosed with CDH every year. 

 

The hospitals in Shreveport LA don’t have level 4 NICUs or ECMO equipment. At 33 weeks I relocated to Houston TX to ensure Rhiley had the best chances of survival. At 38 weeks Rhiley was born on 9/26/22 at one of the best hospitals in the world with a team of doctors who are dedicated to helping babies born with CDH. She was placed on life support at 6 hours old and had life saving surgery on day 2 of life. My sweet baby has gone through more than most people do in their life time. 


On December 1st, she had another surgery to place a g-tube as well as a procedure called Nissen Fundoplication (the top of the stomach is wrapped around the bottom of the esophagus to help prevent/reduce severe acid reflux/GERD)


She is still working on respiratory support and weening down how much support she needs. We are not sure when we will be home but we are so thankful to have such a wonderful team of doctors, surgeons and nurses all helping our sweet baby girl. We are lucky to have the support of the Ronald McDonald House here in Houston but this grant would help even more while I continue to stay in Houston with Rhiley to ensure she continues to get the care she needs. 


Update 2/1

Rhiley is down to 4L of high flow but that has been our stopping point and we have not been able to wean below 4. She has been having retching episodes and we are unsure why as she has a Nissen/Fundo. She went down for a GI study today and the results should be back tomorrow morning. We are still looking at another month and a half at least in the hospital. We are so appreciative of all the support and funding we have received from your foundation and donors. 


Update 2/21

Rhiley came home on .5L of oxygen and her Gtube for feedings. We are going to work on oral feedings with OT once her breathing slows down. And yes I will leave a review this week for sure!! I thank you so much for your support and love through this journey! We are so honored to have known Eden and are so grateful to you and your donors! 

The Brown Family
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