"My Son was Born With Cornelia deLange Syndrome."
My husband Ben and I were married in 2012 and had our first son Caleb in 2013.
My pregnancy wasn’t without complications, and Caleb’s birth was very scary for us due to preeclampsia and HELLP Syndrome.
Because we got married a bit later in life, we decided to try for another baby fairly quickly after our first. On our firstborn’s first birthday, we announced that we were pregnant again.
At our first ultrasound, we were told that my egg sac was enlarged and to go home and expect a “negative outcome.” However, in an unlikely turn of events, those issues resolved themselves and my pregnancy continued on.
We found out we were having another baby boy.
But at fourteen weeks pregnant, an ultrasound showed that our son had spots on his lungs, restricted growth, and fluid around his chest. We were told that our baby would likely not make it to birth alive and would probably not even make it to viability.
However, all of his genetic testing came back normal. At my twenty week anatomy scan, we discovered that our son had a congenital diaphragmatic hernia—a hole in his diaphragm muscle that allowed for his stomach and intestines to travel into his chest cavity and threaten the growth of his lungs and heart. The statistics were terrifying.
Our son only had a 50% chance of survival even IF he made it to viability. He would require surgeries, feeding therapies, an extended time in the newborn intensive care unit, and more.
Because we live in northwestern Montana, there were no birth centers or hospitals prepared to deal with our son’s condition. My husband and I made the difficult decision that, assuming I made it to the third trimester, our toddler and I would have to move down to southern California to live with my parents. That way we would be close to Children’s Hospital of Orange County (CHOC), which could provide our baby with all of the medical interventions, therapies, and specialists he could end up needing.
So when I was twenty-six weeks pregnant and our oldest was one-and-a-half years old, we moved south and left my husband in Montana. I decided to make our pregnancy journey public so that I would only have to update information to one main source, and people around the world could pray with us as we waited for our son’s arrival.
I went to the doctor twice a week for ultrasounds, tests, and monitoring.
Despite the continuing issues with his lungs and growth restriction, we had hope.
Our OB tried to warn us that he thought there was a bigger diagnosis going on, but he couldn’t find one that fit and could be diagnosed before birth.
My husband flew down to CHOC for us to meet with the team of doctors, nurses, and specialists that would be responsible for our son’s care. It was decided that we would schedule a cesarean section for the beginning of April, as we weren’t sure how stressed his lungs would become if I gave birth vaginally.
We were advised not to “google the symptoms” our son was facing. I only allowed myself to do so once during my pregnancy.
I entered “intrauterine growth restriction,” “congenital diaphragmatic hernia,” and “hairy” (at almost every ultrasound past 24 weeks, the technician would comment on how much hair she could see even through the extra fluid in my uterus).
The one diagnosis that fit all three of these symptoms was a genetic mutation called Cornelia deLange Syndrome.
I only allowed myself to look at the informational website for a few minutes—varying degrees of mental retardation and self harm, limbs missing or deformed, hearing loss, lifelong health problems, extreme hairiness, and more.
At first glance, the pictures of kids diagnosed with CdLS were intimidating and made me wonder if I would even think that my son was a cute baby or be able to bond with him.
A week before his scheduled due date, our son decided to come at 38 weeks. My water broke at my parents’ house right before 6am on Friday, March 27, 2015. My mom rushed me to the hospital as my dad cleaned up after me, babysat my toddler, and tried to find a plane ticket for my husband at the last minute.
The delivery room was packed full of medical professionals and the not-so-quiet hum of activity. Our baby was born not able to breathe on his own. He made no sound whatsoever. As the staff was intubating him, I looked over and caught a glance of his head of hair and unibrow.
That’s when I knew my son had Cornelia deLange Syndrome.
They let me see him for a few seconds and then transferred him to the NICU immediately. My mom and sister went with the baby while I was taken to recovery. They sent me pictures and gave me as many updates as they could.
While in recovery, the neonatal specialist came to talk to me about my son’s condition. It was determined that he did, in fact, have CdLS. He was still unable to breathe on his own, but was stable for the time being.
He then used the phrase I was dreading…”incompatible with life.”
More tests were going to be run on his brain, his heart, his gut, etc., but there was not much hope. I called my husband between his flights and told him that our son was not expected to live, no matter how much medical attention he was given. A few hours later, the children’s hospital’s genetic specialist came into my room. The first words out of her mouth were, “Your son has the best head of hair I’ve ever seen. He is absolutely beautiful. I can’t wait for you to meet him once you are stable for a few more hours.”
I will forever be grateful for how she started that impossible conversation. She went on to tell me that my son had no higher-level brain function and a previously undiagnosed hole in his heart. Even if his diaphragmatic hernia and heart were repaired, he would likely never wake up.
Traveling down to southern California from Montana at a moment’s notice when he was out of cell service for hours at a time, only getting updates between flights, and not knowing what he was walking into, my husband got to the hospital at 10pm that night. As soon as he walked into my recovery room, we both started sobbing and held each other tight.
Finally, an hour later, we were taken next door to meet our son. The hospital volunteer, totally unaware of the circumstances, offered us congratulations, wheeled me through the entire labor and delivery floor, and took us to the NICU. We met our son, Jaron Isaiah Fulford, over twelve hours after he was born.
His hands and feet were incredibly tiny, and his little body—only four pounds and seven ounces—was beautiful, but broken.
We cherished every moment we spent holding him that first night.
The next day, my husband and I made the decision to remove our son’s life support the following day, giving his parents enough time to travel down from Montana. Family came and went. We called our pastor and discussed with him the spiritual implications of our decision.
We were afraid that taking away life-preserving medical help would make us ultimately responsible for his death. Instead, our pastor encouraged us that God was the ultimate authority in the situation—if He wanted our son to live, he would.
The number of Jaron’s days was written even before he was even conceived.
This helped us immensely as we moved forward. Saturday was spent recovering, holding our boy, and updating family and friends about our plan of action. Saturday night, I had a full-blown panic attack thinking about what was coming the following day. My nurse crawled into bed with me, held me, and encouraged me to listen to her breathing pattern. I will never forget that moment.
On Sunday morning, March 29, 2015, we removed Jaron’s life support.
In the room with us were our oldest son, my parents, my in-laws, my sister and her husband, my brother and his wife, and my aunt and uncle. A pastor from our parents’ church came and prayed with us. The guy who took me to my high school homecoming dance came and took incredible pictures for us.
Once we realized that he was relatively stable breathing on his own, we allowed our family to hold our son and tell him goodbye. Five hours later, all of our family besides our parents had left. My mom suggested that they take a walk so that my husband and I could eat lunch and spend some time alone with Jaron.
Just minutes after they left, as I held his ear to my chest, our two-day-old son took his last breath. Due to his syndrome, he was completely deaf.
I wholeheartedly believe that Jaron just wanted to feel his mama’s heartbeat again before he died.
We called the nurse over and prepared ourselves for the words, “He is gone.” After his death, we bathed him, dressed him, and held him for a while longer. Our incredible NICU nurse offered to hold him until the funeral home came to pick him up.
The next day, we went back to my parents’ house without our baby. My parents fed us, picked up our son’s ashes, packed our car, and loved on our toddler for another few days before we left for our home in Montana.
Jaron Isaiah, whose name means “I cry out, God delivers,” lived from March 27 to March 29, 2015.
His two days here with us were heartbreakingly beautiful, and we will forever be grateful that he fought hard enough to meet us.
We know that not every baby is born living, especially those with Jaron’s condition. We don’t take that for granted. The last eight years have been excruciating, complicated, long, and blessed. Our third son was born in early November of 2016. His middle name, Josiah, means “the Lord has healed.”
Although we know that we will never be completely healed this side of heaven, we have worked hard to grieve in a way that honors Jaron and helps other families as they face similar circumstances. This past year, I became a bereavement doula so that I can come alongside others as they navigate these murky waters known as child loss.
What my son taught us was that life is worth the fight…love is always worth the risk.
We could have tried to spare ourselves some grief by not allowing ourselves to love our son wholeheartedly throughout my pregnancy and his two days in our arms. Instead, we chose to be all in. All Jaron knew during his short life was love. His legacy lives on.
This blog was written by Jessica Fulford in Bigfork, Montana. She has been married to her husband, Ben, for 11 years. Together they have 3 boys - Caleb, Jaron, and Owen.
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