Cristian’s Story - Congenital Diaphragmatic Hernia (CDH)
I was 19 weeks and 6 days along when we went for our anatomy scan. We were so excited that we were going to see his little face. The happiness quickly turned into sadness when we heard them say, “things aren’t looking right; it appears that he may have some organs in his chest. We are going to send you to the perinatologist center for further imaging.” It felt like my world came crashing down and the three-week wait for the appointment felt like a lifetime.
At the appointment, they diagnosed Cristian with left-sided Congenital Diaphragmatic Hernia (stomach, intestines, and spleen up), scoliosis, a hole in his heart (VSD), radial dysplasia, and could not find one of his kidneys. “Your son has about a 50% chance of survival and this will continue to decrease the further you get in pregnancy. CDH is enough for any family to consider termination, but with everything else your son has wrong, you may want to consider this option. You have three weeks to decide whether you want to terminate the pregnancy.” My heart completely shattered. I told them I was not terminating the pregnancy, so we continued with an amniocentesis the same day. That day, I drove home and it was the most challenging drive I have ever made. I got on Facebook and looked for a support group. I needed to talk to someone who understood how we were feeling. I came across Tiny Hero and that is where the journey started.
I learned about Dr. Kays from moms in the Tiny Hero group and knew we needed to meet with him. We consulted with him and his team to get their opinion. During this appointment, we had a lot of testing done, and even with everything he had going on they still gave him an 85% chance of survival and a 50% chance of needing ECMO. That 85% is much better than the 50% I got back at home. Right then, we knew what we needed to do!
We relocated from New York to St. Petersburg, Florida at 34 weeks pregnant. I was going to be induced on November 1 at 5 pm, but Cristian had other plans. My water broke at 3 am on the morning of our induction date. He did not want to wait any longer. I quickly packed my “hospital bag” and his father and I walked over to the hospital. We were admitted and began the waiting game. Hours and hours went by and my body would not dilate, so they started on Cytotec buccal and after a few rounds of that, my body finally was 1 cm dilated. Next, they began Pitocin and I got to 2 cm before I begged for an epidural. My contractions were 6-7 minutes long and 20-30 seconds apart. At 6 cm, they came in and said I needed a C-section. Cristian was born at 37 weeks and 3 days, on November 2nd at 5:07 pm, weighing 5lbs 4.7 ounces and 17 inches long.
We discovered when Cristian came out that he was an incredibly sick little boy. He went 15 minutes with no oxygen to his brain. In the operating room, I remember Dr. Kays coming to my head saying, “I need your consent to go put your son on ECMO; he isn’t doing well.” I told him, “please do what you need to do to save my boy.” He was intubated immediately after birth, then transferred to the 8th floor where they got Cristian stable and into his room on the CDH floor. Dr. Kays tried everything he could to avoid ECMO, but at 4 hours old, Cristian told him otherwise. Cristian had his repair surgery at 15 hours old and it went well. He rocked it. A few days later, they realized Cristian had a stenotic airway that they tried to fix with several bronchoscopies and dilation. Unfortunately, it was not successful; however, thankfully, this hospital has one of the top airway surgeons - Dr. Smithers. They did a full sternotomy and did a tracheal resection on the stenotic area. Cristian was still on ECMO during his second surgery. The surgery was successful and Cristian was weaned off ECMO and was officially off on his 7th week of life! One happy day. We are currently still in the hospital, but he is thriving and we are currently working our way off the vent. Cristian will later see a specialist for his scoliosis and a urologist for his kidneys. He is now two months old, alert, and fed through an NG tube, which he is handling well! We plan to feed him orally once he is on a low level of the CPAP machine and off the vent! There is also some talk about catheterization to close up his VSD soon.
These babies are so strong and they will show you just how strong they are. They are a miracle. Please, do not lose hope! This is treatable. Do your research and follow your heart. It is not a race, it is minute by minute. Every little accomplishment matters, so celebrate them. Don’t give up hope!
