Vivienne: Five Years Later

ACPAACPA Family Services, Community Stories

Five years ago, we wrote a story about our daughter, Vivienne, who was turning one years old – Now she is almost 6-years-old, and I thought it would be nice to write an update. 

Vivienne had an isolated cleft palate (no lip involvement) that we discovered after she was born. The cleft was quite wide — over 20 mm long — she was essentially missing the roof of her mouth. We met with several surgeons in our city who came well-recommended, but they didn’t have experience repairing clefts as wide as Vivienne’s. We finally found a surgeon who had many success stories with clefts like Vivienne’s. 

Vivienne had many surgeries in the first few years of life: a laryngoplasty when she was 6-weeks-old to treat stridor and hopefully get her drinking more milk; a G-tube inserted when she was 3-months-old and not drinking enough milk to sustain herself; surgery to insert a palatal prosthesis and get ear tubes when she was 9-months-old; a quick surgery to get the prosthesis taken out when she was a year (upon which we found out the prosthesis had closed the cleft from 20mm to 10mm wide, which was a good result); a soft palate repair and re-insertion of the prosthesis to hopefully close the cleft even further when she was a year and a half; a hard palate repair when she was 2 1/2 years old; and surgery to get her G-tube removed when she was 4 years old (hallelujah!). Along the way, she had a few procedures to get ear tubes replaced and deal with other unexpected issues that arose. As any parent of a child with atypical medical needs knows, each surgery was a fearful time for our family — we feared putting her under anesthesia so many times; she got colds and respiratory issues before and after some surgeries, which could have delayed surgeries and also slowed recovery times; we had to avoid play dates and other social outings more than we liked to keep her healthy because she seemed to get sick more often and lost her desire to eat during those times; she had to be rushed to the hospital after one surgery because she had an uncontrolled bleed and ended up getting another surgery 20 hours later (we didn’t sleep for a week); and we feared the psychological effects of the surgeries on her and our older son, both of whom proved so resilient, however.

Looking back now, it seems like a lifetime ago. We met so many angels and Samaritans along the way. Friends who cooked dinners and checked on us after each surgery; parents and relatives who came in town to help take care of Vivienne and our family; medical professionals who offered friendly words and encouragement, and even made a few house calls on occasion; companies and co-workers who re-worked their schedules to give us and our family time off in times of need; and friends and relatives from afar who listened, prayed, and offered words of support. 

Now Vivienne, on the eve of six-years-old, is doing wonderfully. She has many friends, is happy, and is thriving in school. She doesn’t have negative memories of her surgeries — in fact, she loves going to the doctor and wants to be a doctor herself. She still receives speech therapy, and she has come a long way with her speech. One of her big issues was eating, combined with severe acid reflux, and those issues have largely resolved. She is more adventurous with food and loves to help in the kitchen. She is petite but has remained on her growth curve. Her older brother has been a great support to Vivienne and has developed into an empathetic and generous young man. Our family has truly come together through this, and we appreciate the little things in ways we may have overlooked before. 

When we found out Vivienne had a cleft, we were scared of what her future would hold. We encountered some negative medical professionals and insensitive people who told us the worst-case scenarios and predicted dire outcomes for Vivienne due to the size of her cleft and the fact she had a G-tube. There were days that felt so bleak. However, we overcame that — I read many “success stories” like the ones on the ACPA website, I consulted the family resources page on Cleftline, I became my child’s best advocate, I took the advice that helped and ignored the rest, I surrounded myself with positive people as much as possible, and I believed in the best for Vivienne and our family. We cultivated a hopeful spirit, which benefitted us during the challenging times and continues to benefit us now. Vivienne has helped us learn to focus on the beauty around us and believe in the best for everyone — what a gift!