Did you know that October is Dwarfism Awareness Month? My family would love it if you wore green on October 25, which is International Dwarfism Awareness Day, to show your support. Keep reading to find out why!
On July 8, 2014, my husband and I found out we were having twins. We were so thrilled and shocked! We had names picked out for them right away. Baby A was Dalen and Baby B was Christian. When I went in for my 30-week ultrasound, the doctor noticed Dalen’s arms and legs were a little shorter then Christian’s. At 32 weeks, Dalen’s arms and legs were still measuring short. Terms like “skeletal dysplasia” and “dwarfism” were thrown around. I was so confused and worried for Dalen.
Thankfully, both Dalen and Christian continued to grow and passed every ultrasound with flying colors! When I was 36 weeks along, I began having contractions. My doctor explained that I was in early labor and that he would be doing a C-section tonight. “It isn’t too early?” I asked. “They are going to be safe, right?”
Both babies were healthy and didn’t need any extra assistance. But as I nursed Dalen for the first time, I noticed his hands were shorter and chubbier while Christian’s were very long and gangly. The next day, Dalen had numerous X-rays done. We spoke with a genetic counselor, who said she was 90 percent sure he had achondroplasia, the most common form of dwarfism. His fingers, legs and arms were notably shorter then Christian’s, and his head shape was a bit bigger. She told us she couldn’t be 100 percent sure until a blood test confirmed it, but this wasn’t an emergency. We were released from the hospital with two healthy and happy babies.
At home, we soon noticed Dalen snored, and we could always hear him breathing harder than Christian. Our pediatrician suggested that Dalen do a sleep study—and to our surprise, we learned there was no sleep center in our hometown of Fargo, North Dakota. We were referred to Gillette Children’s Specialty Healthcare, more than four hours away.
Dalen was 5 weeks old when he had his first sleep study. My husband and I were very nervous and weren’t sure what to expect. When we got to Gillette, we were greeted with open arms. The nurses and staff were absolutely amazing. We couldn’t have asked for better treatment! Two hours into the sleep study, John Garcia, M.D., told us Dalen had severe sleep apnea. He had stopped breathing about 35 times an hour and needed to use a CPAP machine.
In April, we made our second trip to Gillette for another sleep study and an MRI to check Dalen’s spine and brain stem for any narrowing or compression. The second sleep study revealed he still had severe sleep apnea and had quit breathing about 17 times an hour. An order for an oxygen machine was sent to Fargo so we were able to get it when we got home. During the MRI, while Dalen was sedated, we were able to get a blood sample, which confirmed his diagnosis of achondroplasia.
A few hours after Dalen’s MRI, we learned that Dalen does have a narrowed brain stem that will most likely require surgery down the road.
Our next trip to Gillette, for a third sleep study and a neurosurgery check-up, was in August. I asked if we could split the night to see how he would do for a portion of the night without any CPAP assistance. Gillette staff said they would wake us up later to put on the CPAP—but they never ended up needing to. Why, you ask? Because Dalen didn’t qualify for it! He no longer needed any breathing assistance while he slept. This time, he stopped breathing only about 2.6 times an hour. Anything fewer than 5 times an hour is considered “mild” and requires no treatment. We were ecstatic! Dalen absolutely hated having to wear oxygen equipment to sleep, and it was always a fight to get it on and make sure it stayed on.
This fall, we had a bit of a setback as Dalen began showing further symptoms of his narrowed brain stem. He had another MRI, which confirmed he will need surgery sooner than we initially expected. We anticipate scheduling his surgery in the coming weeks. We’re confident Dalen will overcome this latest challenge as he’s done countless times already in his young life.
Today, Dalen is pretty much rolling around to get where he needs to go, and he’s recently started doing a slow army crawl. Both boys are doing wonderfully and moving at their own pace. We have many people ask us about Dalen and we are never afraid to talk about dwarfism. We would rather somebody come and talk to us instead of pointing or staring. We want to spread awareness and knowledge.
Editor’s note: Read the ABC News story about Dalen and Christian here.