A lot of people ask how we found out Jean was a little person. They ask if we knew ahead of time, if we were scared, what we did when we found out. Well, here are the answers!
When I was twenty weeks into my pregnancy, I went in for my mid-term ultrasound. I went in for a photo op of Jean, and my doctor then let me know that her arms and legs were measuring behind a couple of weeks or so. I didn’t think it was a big deal until he told me it was indicative of dwarfism and that I needed to see a specialist. I went on to see a specialist in Dallas for a second level ultrasound, and later I also had a fetal MRI done. All of these tests confirmed that Jean is a little person, and they tried to estimate viability to prepare us for when we had her. My doctor in Longview told me that I would have Jean in Dallas, at Medical City Children’s Hospital since their neonatal unit has experience with little people.
When a little person is born, there is a question of viability due to a few circumstances. The first is that their heads are larger and sometimes that causes pressure on the brain stem, cutting off certain functions that are essential to living. Another issue is that they have a tiny skeleton, but normal sized organs, such as the lungs. This was our concern with Jean. When she was born via C-section, she came out crying and breathing, but she couldn’t catch her breath. She was breathing as if she had been running. Huffing and puffing. Jean ended up needing a tracheostomy, a g-button, and ventilator assistance with breathing. This was all intimidating, so I sat up in the NICU with my husband and child, and we watched YouTube videos on feedings, trach changes and what to do if your vent fails. We wanted to be well prepared before we came home, or even had the surgery. We had training in the NICU and then went on to a rehab center with Jean and trained there before we came home.
When Jean was born, she was smaller than the average baby, she was 16 and ¾ inches long and weighed 6 pounds, 3 ounces. She was tiny and with rolls all down her arms and legs. It was precious. Jean had hip dysplasia, which is common with little people, and we wore a brace for 6 weeks to hold her hip into place so her muscles could grow around the joint properly. This wasn’t bad in the scheme of things, she had so many other things going on, that we just learned how to navigate with the brace. Jean struggled with head control as an infant due to her head being larger and therefore, not proportional to her body. We came home with orders for physical, occupational and speech therapy. We also came home with nursing orders and a hefty amount of supplies each month. All of these resources were essential to Jean’s ability to thrive and mine as well. We took advantage of each therapy, we had them out to the house several times per week. I found nurses through Facebook to get hired through our nursing agency. I had to work full time and so did my husband, so it was very important that we arrange everything to work cognitively. Bringing Jean home helped her flourish. It created a thriving, happy, boisterous little girl.
Life with Jean has always been an adventure, but the trach, vent and g-button were all extra bonuses. It took Jean around 2 years to wean off the vent and grow enough to where her lungs could fully expand into her chest. Another year later, we removed the tracheostomy tube. Jean’s stoma, where the tracheostomy was, is still open but healing naturally. Now, we still have the g-button for extra nutrition to keep her body nourished as it should be, and Jean only needs physical therapy. At her last speech evaluation, she ran the appointment. Jean is sassy, confident and she never meets a stranger. Her favorite places to go are the Dollar Tree and Brookshires grocery so she can say hi to everyone. COVID has kept her at home, but we make sure to face-time friends and family often so she can still be social.
As far as therapy for Jean, she is still participating in physical therapy. It took her longer to walk than the average child since she had to learn to balance and move with the proportions she has. Jean has participated in horse therapy at Windridge Equine Center and that has advanced her movement significantly. Jean still struggles with climbing, skipping and running. We have found that she likes to push a stool around the house so she can climb to whatever she wants at the time. She was supposed to start pre-k in the fall, however due to COVID we are unsure of the plan for now. I would say her biggest struggle is that she is too big for her britches! Jean is our constant reminder to always keep learning and innovating and adapting, she is the most resilient little girl I have seen. Jean is now 4 years old, 22 pounds and 27 inches long. We are unsure of how big she will get. Due to the fact that her type of dwarfism is undiagnosed, she is literally one of a kind!