The Gibson Family

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

Update 5/1/24

On January 22, 2024 the lives of Brionnah and Kurtis changed in a significant way. While attending their routine 20 week Ultrasound for their first baby Kash, the attending doctor found an abnormality. He wasn’t sure whether it was CPAM or CDH and asked if the couple was comfortable transferring care to the University of Michigan, who would be more equipped to handle this prognosis. Three days later the team at the University of Michigan consulted and identified baby Kash to have severe Right sided Congenital diaphragmatic hernia. Within the next month they would come to find out Kash’s LHR was roughly 20%, while the good news was his Echo was clear and there were no other genetic factors at play. This would be the start of the journey for us seeking care from the well accredited John Hopkins Children’s Hospital in St. Petersburg, FL. 

We are currently relocated down to St. Petersburg, FL to John’s Hopkins All Children’s Hospital for our scheduled C-Section at the end of the month. Coming down to JHACH has been a blessing for our baby and birth since he has severe R CDH. Dr. Kays gave us so much hope while also being optimistic in our journey. We went from a 50% survival rate to 90% here and while there could be complications with how severe it is and every case is different we are so grateful for a greater chance of success. 

This grant would be such a blessing to our family as we had to relocate 17 hours to provide the best care we could find for our baby. My husband cannot work remotely so while taking time off we are limited to resources as well as we have a home, dogs and cats back at home that need cared for. This grant helps elevate so much stress from our lives and allow us to focus on Baby Kash and his CDH journey and being there for him every moment we can. 

Update 5/28/24

HAPPY BIRTHDAY, Kash Jay (KJ) Orlando Gibson!

After 9 months of waiting the day we’ve anticipated with excitement and anxiety finally arrived. Due to some other issues going on in the hospital we had to wait another couple hours but finally at 11:26am Kash Jay Orlando Gibson was brought out of his super cozy home and into the bright loud world. He weighed in at 6lb 13oz and is 20.5 in long. Unfortunately he didn’t have time to meet mommy and daddy before he was whisked away to the waiting team of CDH specialists. They were able to put in his breathing tube to help expand his lungs and give him oxygen but his initial blood gas showed that even though his lungs were getting rid of CO2 well they just weren’t picking up enough oxygen to send to his blood. This was expected but we were still hopeful he could beat expectations and avoid ECMO. 

ECMO involves putting 2 catheters in the blood vessels in his neck. The blue blood comes out of one catheter and goes through an oxygenator (artificial lung) and then goes back into another catheter nice and red. His oxygen number jumped from 13 to over 100 almost immediately. We are so thankful for that. 

While he’s on the ECMO machine his lungs can rest. Kash will also get some medications to keep him comfy and sleepy. Obviously lots of wiggling right now isn’t the best idea. Plenty of time for his spunky personality to come out later when he’s feeling better. 

Because his lungs weren’t wanting to pick up oxygen the Dr Kays (pediatric surgeon) wants to do the repair tomorrow morning. The only way to make Kash’s lungs happier is to stop squishing them. So he’ll have his liver pushed down to where it belongs and a goretex patch placed where his diaphragm should be. 

Speaking of surgery his mama did great with hers today. She had a little bit of trouble with her BP being low and some more bleeding than they wanted but thankfully everything has improved and she’s patiently waiting to get to Kash’s room. 

Update 6/21/24

Kash has had an exciting last month! Since he was born on 5/28 he was on ECMO day one and got off on day 16. Since then he has loved having more room to wiggle around without the ECMO cannulas and has been weaning down the vent settings since June 16. He is currently at 32 breaths when we started at 80. We will soon hopefully be coming off the ventilator and we will finally get to hold and feed him! We cannot wait!! We are so proud of our severe R CDH boy and he has been so tough through every obstacle. We are also so thankful to be at JHACH and can’t thank them enough for all they have done for our sweet Kash. 

Update 7/24/24

It has been an exciting month! On June 26th mom and dad were able to hold Kash for the first time! He was almost 4 weeks old and it was beyond worth waiting for. Since being extubated he has come off CPAP and been moved to wall oxygen. He is currently on 0.3 liters of oxygen and working on his bottle feeds. We have been so impressed by his strength, courage and perseverance to overcome many obstacles. We are now faced with the second biggest hurdle outside of surgery which is feeding. The feeding journey is such a struggle. Thankfully Kash has amazed everyone and has learned to love bottle time and hasn’t shown any signs of needing a G-tube. Along this journey we have learned his heart could use a little help. We will be continuing to monitor this and do regular check ups to see if any intervention is necessary. We are heading closer and closer to discharge and praying it will happen in the next few weeks/month.