As a cleft strong mom, surgery on your young child is part of the job description. Since Grace was born, she has had four surgeries so far, with several more in her future before she’s even a teenager.
I am part of several support groups on Facebook, for both cleft-affected families and for Ectrodactyly (EEC Syndrome.) This blog is to also help other families who have been affected by either conditions. KNOW THAT YOU ARE NOT ALONE!
When I first found out Grace had both conditions, I cried. I cried a lot. I was worried, afraid, confused about everything. At her mid-pregnancy ultrasound, we still did not have many answer. We saw her cleft-lip, but didn’t know if she had a cleft-palate. We saw she was missing digits on her hands and feet, but did not know how many fingers and toes she had. Not knowing is a horrible feeling as a new mom, especially with raging pregnancy hormones.
When Grace was born, we had all of those answers, but now faced new questions. How will she eat? How long will she be in the NICU? When will she need surgery? What hospital should we pick for her cleft team (yes, team of doctors.) I was bombarded with so much information that my brain felt like squash. I had to bring a notebook to write notes so I can relay them to my husband later.
My best advice? Take it slow and have a support team. I was still sad and hated leaving my daughter with strangers every day for nearly a month. I talked to so many doctors that they understood why I had my little notebook to write stuff down. She had multiple plastic surgeons (for her hands and feet and then her cleft team), a cardiologist for a heart murmur, a kidney specialist, occupational therapist, speech therapist (working on her feedings), physical therapist and regular NICU team to monitor her general health.
When Grace was about 4 months old, she had her first surgery to repair her lip. The first is the hardest, especially as you watch her roll away with the doctors on the hospital bed and then the after surgery bleeding and grogginess. Her surgeon in Chicago did an amazing job, though. Her ear tubes were also inserted at this time. She had her palate surgery around 7 months. This one was hard on her nutrition. Feeding was a challenge using a cup to feed (no bottles allowed.) She went on a hunger strike at the hospital and had to be kept an extra day.
Her third and fourth surgeries were for her tear ducts. She was missing a portion of her duct, which left her vulnerable to eye infections. Both of these surgeries failed. She will go in for a third try when she’s a bit older.
Future surgeries, including the tear duct surgery, might include narrowing her ureters (she is prone to UTIs and the bacteria leads to swelling in her kidneys) and a second palate surgery to close any gaps as she gets older.
I know that’s a lot of medical chat, but now you see why a new, tired mom needed a notebook! I hope this helps anyone going through what I was going through as a new parent to a cleft and EEC affected baby. Also know that THERE ARE SUPPORT GROUPS! Finding others was one of the greatest helps I could have hoped for.
Feel free to always message me on here as well or leave a comment. We are strong.