The story of Katlyn
Ivy is my third daughter. With her I had a normal pregnancy with Ivy. As soon as she was born on the night of October 1, 2019 we noticed some thing’s being a little off. She had a very short umbilical cord, her unique fingers, her lip was sunk in do to her gums not being there. She couldn’t suck a bottle for us. The pediatrician came in looked at her the next morning and quickly decided to send her to the Children’s Hospital. So she was Life flighted there. Alex and I had to drive here. As soon as we got there to see her and to get answers they done the best that they could explaining her condition to us. For the next three weeks Ivy stayed in the NICU at the Childrens hospital. With in her hospital stay she had her first surgery to remove a large tumor from the back of her tongue. They said it was a miracle that she could even breathe on her own with that large tumor there.
We were so excited when we finally got to bring her home. A few months after she’d been home she had her first MRI and that was the scariest moment of our life. After the MRI the doctors and nurses came in saying we were going to PICU right away. We kept asking what was going on finally one person said they saw swelling and fluid on her brain. Our hearts dropped from our chest we were demanding answers of what happened, what could have caused this. We found out there was an injury that occurred during giving birth. 6 months later she had another MRI and everything was normal. She then went on to wearing a helmet and in 2021 after 9 months of helmet wearing she finally graduated!! Now fast forward to her next surgery in 2020 she had cleft palate repair surgery and it wasn’t a successful surgery. But now in 2022 she goes to have her second cleft palate repair surgery and we pray it’s a success.
Because OFD1 is so rare let me give a little information on it
OFD1 or Oral Facial Digital Syndrome Type 1 is a very rare disease it occurs 1 in 250,000 newborns a year.
Ivy is now 2 years old she has trouble speaking so she is learning sign language. Ivy loves watching Cocomelon and Blippi. She loves coloring and playing hide and seek with her sisters. She is so full of life and is doing very well. She does occupational Therapy/Speech Therapy. She’s my hero. 💕
What is included in OFD1
Oral (lobulated tongue, tongue nodules, cleft of the hard or soft palate, accessory gingival frenulae, hypodontia, and other dental abnormalities)
Facial (widely spaced eyes or telecanthus, hypoplasia of the alae nasi, median cleft or pseudocleft upper lip, micrognathia)
Digital (brachydactyly, syndactyly, clinodactyly of the fifth finger; duplicated hallux [great toe])
Kidney (polycystic kidney disease)
Brain (e.g., intracerebral cysts, agenesis of the corpus callosum, cerebellar agenesis with or without Dandy-Walker malformation)
Intellectual disability (in ~50% of individuals).