Ivy was born on July 28, 2021. In my pregnancy I was considered high risk due to high blood pressure so they were watching growth carefully. At 28 weeks they noticed the long bones of the baby were slowing down compared to her body. They kept watching it until birth. They didn’t seem too concerned since I am on the shorter side and there as no other “markers” as they would say. They were looking for more fluid and her head shape/size. They did request NICU to be at delivery just in case. Not once did they mention the words “skeletal dysplasia” or “dwarfism” to me at all.
After she was born, she was assessed and they stated that her limbs were “a bit short but not as short as we expected” and said we could get x-rays and see genetics down the road, if we wished. And everyone went on their way.
It did not take long before I was analyzing everything. There were some traits on Ivy that I noticed were different than my first 3 kids. I started googling and this was the first time I had heard the word “Achondroplasia”, which is the most common form of dwarfism, and a type of skeletal dysplasia. I spent weeks looking at kids on Instagram with it, and reading traits. I started to notice that Ivy’s hands looked as they stated “Trident Hands”. I read that people who have achondroplasia cannot fully extend their arms as their elbows won’t bend all the way, and sure enough, neither did Ivy’s. I was very concerned so my doctor sent me to an orthopaedic specialist at 2 weeks old to go over Ivy’s x-rays she had done after birth. The doctor thought she looked proportional and fine. She said if I wished she could see her when Ivy got older, but she saw no discrepancies between her short and long bones and her head/face looked average. I left that appointment feeling a bit better, but it only took until that evening that the researching started again. I saw that achondroplasia was very rare, and our chances were 1 in 30,000 of having a baby with it. We already have a son with a rare heart defect which was 1 in 5,000. What were the chances of it being Achondroplasia? I had never met a Little Person in real life and only seen a handful of people ever with achondroplasia. Mostly I only saw them on TV shows, such as “Little People big world” and “The little Couple”. As time went on I had completely convinced myself Ivy had achondroplasia. But I hadn’t convinced my family yet or anyone really.
Finally, when we saw our doctor for a checkup at 6 weeks old, I told my doctor right away that I was sure Ivy had achondroplasia and her arm/leg length was not the way it should be. Finally, she saw it right away. She sent on a referral for us to the pediatrician, and they stated we would be seen “within 3-4 months”. I had read that babies with achondroplasia can have issues with their spine and usually have an MRI done to ensure there is no issues. I wanted her seen ASAP. It took a month of pushing and pushing before we were finally seen by the pediatrician. She stated that yes, she was sure Ivy had a skeletal dysplasia and yes it was likely achondroplasia but of course we would need to get genetic bloodwork done to confirm, but genetics was closed due to restrictions in place. Within about a week of that appointment Ivy had a date for an MRI under general anesthesia. And sure, enough it showed narrowing of the spine and that her spinal cord was being compressed. She would require surgery within 6 weeks as this could cause an array of issues, and possibly death. The neurosurgeon wanted her to be seen by many specialists before surgery: an ENT, have a sleep study, and an orthopaedic specialist. We saw them all within 2 weeks and then the next week she underwent surgery. We found out that Ivy also has sleep apnea. After surgery she spent 2 days in PICU and then home we went.
This is where we sit today. She just had her second follow up sedated MRI this week to check to ensure all this good after surgery. However there is no signs that it is not!! This journey is very new and we are all learning as we go!
Connect with Kailey on Instagram @raising_myfour