Cheryl’s Story: Waiting with Hope

August 23, 2023

As we love to encourage our parents to reach out with their stories, so our Verity’s Village parents have an ongoing invite to share their families’ stories to our blog. Cheryl agreed to share her ongoing story about Elijah Raphael her sweet son.

Her little Elijah Raphael was originally diagnosed with iniencephaly, but as they kept asking questions, he was diagnosed with fetal akinesia deformation sequence. Other doctors called it arthrogryposis, focusing on the multiple contractures. Upon birth the arthrogryposis was confirmed, and he has an extremely rare genetic mutation only 12 other children have been born with in the past.

Cheryl’s Story: Waiting with Hope

Our story is a bit unusual in that ending up in the NICU was the ideal outcome. A NICU stay meant our baby was alive, which would be a miracle. We were told at 20 weeks that something was significantly wrong with our baby, and to come back in 2 weeks for another ultrasound. At that appointments the MFM said that our baby had a terminal condition and likely wouldn’t survive much longer. We asked for confirmation, and at 25 weeks, I had an MRI of the baby. At that point, we were given a different diagnosis, but not much hope for a different outcome. 

We saw so many doctors and specialists over the next 10 weeks, hearing the same thing over and over again: if the baby survives the pregnancy, the baby will die at birth. We were sent from one office to another with no one willing to commit to delivering this high risk baby. Our sweet guy was bent backwards with his head touching his backside and his legs flipped up. His head was very retroflexed, and the doctors were convinced that it was stuck that way, that it wouldn’t come forward, and so he wouldn’t be able to breathe. Finally at 35 weeks, I found a doctor who would do the c-section scheduled for 39 weeks. 

I went into labor at 38 weeks, so an on call doctor I’d never met did the surgery. The baby was stuck, and the c-section was rather traumatic for us both. They finally yanked him out, breaking both of his legs. He was whisked to the waiting neonatalogy team. Not only was his head not stuck back, it came forward easily, and they got the breathing tube in first try. Our baby went to a nearby level 4 NICU, and I was discharged 24 hours later to go be with him.

We named our son Elijah (the Lord is my God) Raphael (the Lord has healed). We wanted a name that reflected his strength and story, and hope and promise.

The next few days were a whirlwind of specialists, tests, procedures and enough reports to make our heads spin. I was trying to exclusively pump and recover from surgery as well. My husband and I were both at the NICU around the clock for 2 weeks, while my in-laws were with our other kids. We needed to get back to life for their sakes. So we started the routine that we would follow for the next 10 weeks. I was home Sunday afternoon through Wednesday morning, doing the bulk of the homeschooling, taking them to activities, pumping, and doing lots of laundry. Wednesday we swapped, and my husband came home to help them finish their work, do fun things like science (they learned a lot about genetics, and also infant CPR!), along with coaching soccer on Saturdays. Our kids were 13, 10, 8, 5 and 2 at the time.  Sunday we would trade back. 

It was hard to be at both places. In the NICU, I felt guilty for not being with my other kids. I felt scared that I would make a wrong decision or not be enough of an advocate. At home, I felt guilty for not being with my baby. It was hard to pump often enough, and being with the kids with no break or backup was tiring. 

We would buy a small amount of groceries to put in the community fridge; eating in the cafeteria was so expensive and got old. We slept at the NICU most of the time, but were blessed to have access to a Ronald McDonald House for showers. After a few weeks our baby got moved out of the big, main room and into a little private room. It was so nice to not sleep in the middle of everything and to have a little space. Though I missed getting to see other families and all the bustling activity. 

By the time baby was almost 2 months, breathing was the only thing keeping him in the NICU; he couldn’t maintain extubation. So we opted for a trach so we could bring him home. We tried so hard to get him home for Christmas, doing all our training and lining up all the extra services he would need. We even found our own home health nurse after the agency gave up. We finally brought our precious miracle boy home 12 week after he was born, 2 days after Christmas. 

Some things I learned during our NICU stay:

• Rounds are really important. The team discusses your baby and their plan. This is a great time to ask lots of questions. 
• Take notes. You think you’ll remember things, but all the days run together, and you get confused 
• Stand up for yourself and your baby. Speak up when there’s an issue; it’s OK if it seems like a doctor or nurse doesn’t like you, baby’s needs come first.
• Set goals, so you have things to look forward to and celebrate them when/if they happen.

Leaving the NICU wasn’t the end of our story though. Our guy has lots of complex issues and still needed therapies and specialist appointments. He averaged 3 appointments a week for the first few months. In April, he was back at the hospital in the PICU for part of it, because he got sick. With a medically complex kiddo, it’s not as easy as seeing a pediatrician and getting antibiotics. It is an inpatient stay at the hospital, septic workups,  failed IVs, lots of rounds, pushing for what you know he needs, and more. 

At the end of May our lives were forever changed again when our miracle boy had a cardiac arrest at home. We starred CPR, and he was resuscitated at the local hospital. Something happened in his brain that stopped his heart. As a result of the code, he had massive brain damage. His brain stem is in tact and functioning,  but they don’t know that he’ll ever regain other brain functions. He no longer smiles or shows personality. It’s heartbreaking. But he survived, our miracle boy, and we don’t know what’s in store for our future. We will love him for every minute we get. 

– Cheryl

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