Today’s featured cherub is Rafael Gomes. Rafael is the son of Christina Gomes. Christina had this to share about Rafael:
“February 13, 2015, was the day that I first heard the words Congenital Diaphragmatic Hernia. To say the news was devastating is an understatement. My son was our rainbow baby after a recent loss. We were asked to return for a follow up ultrasound which turned out to be one of many more to come. I had to Google what CDH meant and tried to do as much research as I could between appointments. Our current insurance and health provider completed a second ultrasound after diagnosis and the LHR (lung to head ratio) was under 1.0 and is considered more severe and decreases the chance of survival. The doctor explained that these babies if they survive, often have serious health issues, difficulty breathing, feeding and digestive challenges. The doctor gave us the option to abort and explained the time frame we had to make that decision.
Personally, abortion was not an option I considered. Whether it was a minute, a week, a month or a lifetime I would put my faith in God and the medical professionals to give my son the best care and chance he had. I was also committed to face whatever challenges he may face after delivery.
Our insurance company referred us to UCSF 55 miles away, where they often see CDH cases, not only with their experience and research, fetal treatments we certainly felt more confident that we were in good hands at UCSF. We toured the new Children’s hospital and had a follow up ultrasound which the LHR measurement was higher therefore we were no longer a candidate for the fetal treatment of the balloon tracheal occlusion. UCSF is one of the few hospitals that do that procedure at all. Our chances of survival had now increased with the latest LHR measurement, however the Neonatologist cautioned us, with the words “be guarded”.
We tried to stay positive, faithful and hopeful but of course in the back of our minds knew this could be the biggest challenge we face in life or the most devastating loss. On 6/29/2015 I was admitted to UCSF for an induction in my 39th week. At 8:55 pm I delivered our son in an operating room even though I had a natural birth, my son was born and we didn’t have that traditional moment of celebration with a child placed on the mother’s chest. He was swept through a window connected to the operating room for immediate intubation. He did make a squawk of a sound when born. I went to recovery and a few hours later wheeled by my husband to visit my son. The details of daily life in the NICU, I journaled while staying by his bedside as much as possible, trying balance some time for my other 3 children wasn’t easy. I slept at UCSF and was in the hospital walls for most of the day. I liked to be up in the morning when the doctors did their rounds so I would get an update on Rafael’s progress and plan for the day. We were very blessed that Rafael had a “remarkable course” as the doctors put it. He seemed to tolerate every step along the way of gradual weaning of respiratory support. He didn’t have severe reflux as some babies do. He had his repair surgery 3 days after he was born, which was a muscle flap repair. He did not require ECMO or Nitric oxide. The nurses said, if needed they had plenty of other methods of help for him, but he was showing strength that he didn’t need those extra measures of support. They warned us of the CDH cha cha… one step forward, one step back.
After 2 weeks our insurance provider considered him stable and requested he be transferred to one of their hospitals. It was a stressful adjustment at first. Within 3 weeks, he was off all respiratory support. Our son’s biggest hurdle was eating enough and gaining weight consistently. I tried breastfeeding and he latched on but not seeing his actual intake and not gaining weight consistently, I chose to pump breastmilk and fortify the milk for extra calories. After just over 5 weeks on August 7th, 2015, our son came home tube free. No oxygen and no feeding tube and for those that understand CDH babies, that is such a blessing. We made sure we were up to feed him every 3 hours and definitely weight gain was something we worried about, more so than any of our other children. Today our LCDH survivor Rafael is a very energetic, intelligent 3 year old toddler that keeps us on our toes. He is followed by the CDH life clinic at UCSF now on an annual basis. He was discharged from Pulmonary Hypertension department and his case was mild and medicated only early on. Overall, he’s a miracle and a story of hope to for any expecting CDH mothers out there. Stay hopeful and faithful, these heroes will amaze you.”
