Raphael

My husband and I had tried for several years to conceive our first child. When I found out I was pregnant in October of 2017, we were both overjoyed. About ten weeks into my pregnancy, I went for a routine ultrasound. My OB and the technician found the first issue—a small loop in our baby's bowel. I was sent for additional testing with a specialized fetal center. As I was waiting for the contact information, I remember having a terrible feeling that this was the start of more issues. Unfortunately, each visit with the fetal center showed more concerns.

Our next ultrasound showed that our baby's bowel continued to be echogenic. The doctors told us it was extremely rare to see this issue so early in pregnancy, and recommended an amniocentesis, which we declined. At 16 weeks, another ultrasound showed additional issues—our baby's brain had enlarged ventricles. At this point, the doctors became extremely concerned—they told us that this was most likely the sign of a severe genetic disorder or infection. They were concerned it was CMV, so we had an amniocentesis, which came back normal—no signs of infection or genetic issues.

At our next ultrasound, the doctors found more issues—the fluid had increased, and our baby's cerebellum was now significantly smaller than it should be. At this point, the doctors began encouraging us to terminate. I explained to one of the doctors, the co-director of the fetal center, that I was Catholic—and as a Catholic, that wasn't an option for us. More than that, we were committed to having this baby. He looked me in the eye, and told me—"I am a Catholic too. If you were my daughter, I would recommend a termination." Those words were devastating—we had prayed for this baby for so long, and to hear that put us in a place of shock.

For the next ultrasound, my parents came down to be with us. Once again, a large medical team crowded into the ultrasound room. Our baby moved about on the screen. Once again, we gathered in a conference room to discuss the results. Another doctor, the other co-director of the fetal center, went to a white board. He made columns for each visit, and listed all the issues they had seen. He stacked all of the ultrasound reports on the table. And he compellingly made the case that our baby would not be able to lead a normal life. He repeatedly referenced how we still had time to terminate—despite the fact that we had repeatedly told the entire team that was not an option we would take. He painted a picture of our lives totally changing as he predicted that our baby would either die or be severely disabled. When we again said we were committed to our child, he told us there was no point in doing more tests until we did an MRI in 8 weeks. We walked out heartbroken. At church that weekend, our pastor reminded us that, "God is good—all the time." That weekend, those words made me cry.

That week, my husband and I drove to a small town in the Texas Hill Country called Wimberley. We stayed at a beautiful B&B and spent time together, relaxing and praying. We decided to name our son Raphael, after the archangel of healing. We committed to preparing to welcome the baby God sent us, no matter what happened—we signed up for counseling and also signed up to meet with a priest at a retreat center. At that retreat center, we met another woman who had been told similar news by the same doctors we were seeing. Her faith inspired us, and she helped us go see a different team of doctors at a children's hospital in our town. Every day, I thank God for putting Karla in our path and helping us find a team of doctors who saw a different outcome for our sweet Raphael.

A few weeks later, we had a fetal MRI and ultrasound at a different fetal center. Again, my parents came down for the consultation. We sat in a room with a pediatric neurologist. He explained to us that our baby had aqueductal stenosis—an obstruction in the pathway of his cerebrospinal fluid. He told us that babies with this condition had a range of outcomes—from completely normal intellect to severely disabled. My husband and I burst into tears, and he started reassuring us that we didn't know where our baby would fall on the spectrum. My husband interrupted and said, "I don't think you understand—we are crying because we are so happy that you are saying we are going to have a baby. We had been told our baby would most likely not survive birth." The doctor told us to buy a crib, because we were bringing a baby home. We went out that day and did just that! Throughout the rest of my pregnancy, we had ultrasounds every two weeks and were followed closely by a doctor specializing in high risk pregnancies. I had extremely high fluid levels (polyhydramnios), but everything continued to progress.

On June 20th, we welcomed Raphael into the world via emergency C-section at 34 weeks and 3 days. My water broke (likely due to the extra fluid), I had preeclampsia, and Raphael was having issues with his heartrate. When he was born, Raphael came out screaming! After birth, we found out that Raphael had a series of digestive tract issues. At one day old, he had an extremely long surgery where they repaired his TE fistula, repaired his duodenal web, and measured the length of his esophageal atresia. He spent about another two months in the NICU before having his second surgery to repair his long gap esophageal atresia. Throughout his three months in the NICU, his brain was monitored—but never posed a significant issue.

In September, we were discharged. A week later, Raphael had a cardiac arrest at home. I did CPR and we went back to the hospital, where he spent about another five weeks. Due to his esophageal atresia, he had severe reflux, which had caused him to aspirate. While in the hospital, he had a fundoplication done to prevent another event. In October, he came home again. At that point, he had a colostomy as well as his g-tube. Raphael had 3 additional surgeries over his first year—2 more on his digestive tract, and 1 to repair a laryngeal cleft. Raphael has had whole exome sequencing, which showed he is normal genetically. Most likely, he has VACTERL syndrome. He is followed closely by multiple doctors—neurosurgery, GI, surgery, ENT, phthalmology, pulmonology, urology, and neurodevelopment, to name a few. At this point, he has not needed any brain surgeries to treat his hydrocephalus. He also receives speech, physical, and occupational therapy. Thankfully, he qualifies for home nursing, which has kept him healthy.

Despite all of these issues, Raphael is absolutely thriving. He just turned one. This week, his neurologist told us he no longer needs to see neurology! He is on track in fine motor skills, language, and social skills. More than that, he is the happiest baby—he loves to giggle, is learning to eat by mouth, and is learning to talk. Raphael lights up any room he is in. He loves playing with his dogs, throwing his toys, and eating all kinds of purees. Raphael's first doctors could not have been more wrong. Raphael is our superhero—he is living proof of answered prayers.

 

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.