Genevieve’s Story: A Mother’s Determination, No Matter the Distance

Genevieve before and after her non-surgical treatment with the Stanford Orthodontic Airway Plate (SOAP)

Genevieve was born in August of 2024, at home, in Chattanooga, TN. Her midwives immediately noted a problem as her oxygen dropped in supine position and they saw her cleft palate. We went to the hospital an hour after her birth where she stayed for the next two months, being diagnosed with PRS (Pierre Robin Sequence, characterized by micrognathia, or a recessed jaw, and often a cleft palate) which caused her severe sleep apnea. 

Adrenaline carried us through the first few weeks of lots of tests and pokes and prods for our little girl while we balanced home life with hospital life. Our older children could not visit their baby sister in NICU and my husband and I took shifts, one parent at home, one at the hospital. Then the bottom fell out.

Although she was doing well on room air in prone or side lying position, we were informed that she was not eligible for the jaw distraction because of her laryngomalacia (which we later learned was caused by her recess jaw more than anything else). The jaw distraction would not help and was not safe. That was our lowest day, uncertainly & insecurity followed the lack of path. We didn't know how or when our baby would come home with us.

One minor surgery later, we were tentatively back on track for a jaw distraction in place of a tracheotomy, and a friend sent me a link to HOAP for PRS, a charity ran by a group of parents whose babies underwent a treatment called the SOAP (Stanford Open Airway Plate). I thanked her, texting that I’d look it all over when the baby was asleep.

I remember reading about the SOAP for the first time late that evening while holding my baby in a rocker chair in a pod full of other parents like me. Excitement welling, a potential path ahead, I read that our child could be a candidate for a non-invasive treatment where she would wear an orthodontic device to facilitate her natural jaw growth. It was too good to be true, someone must be selling me on something. I began vetting it out and by the end of the next day, Genevieve’s medical records were on their way to Dr. Choo, a cranial facial orthodontist who developed the innovated OAP program at Standford. I told my husband that I was about to do something crazy. With our hospital staff’s and our insurance’s company’s help and support, we were transferred to CA within a week and the OAP was placed two weeks later. A week and 1/2 after that, we were home. Genevieve never had breathing trouble again.

I can’t say the OAP treatment was always easy (the feeding journey being the hardest part) and the travel from Tennessee to California, four times in total, was grueling, but I can say, in retrospect, the worse day for us--when we were told the jaw distraction was not an option--was the very best day possible. That piece of terrible news changed our trajectory and because of that, we choose an alternative route. I now sit with a nine-month-old girl who is just a regular baby (cleft repair with surgeon Dr. Thurston at Erlanger soon to come, the commute thankfully only about two miles away from our house), and no one looking at or interacting with our girl could guess her intense journey if we choose not to share. 

Several phrases, whose authors are unknown to me, run through my head when I reflect about the ups and down of Genevieve's journey, the worse now behind us. Two come to mind now:  "I will sharpen my empathy on the stone my pain," and "the kindness of strangers".  Simple words that mean a lot to me. I had a woman who I hardly knew send me information on a lifechanging treatment, love and care surrounded my daughter in the Erlanger and Stanford NICUs in the hours we couldn't be with her, the HOAP organization held my hand when I decided to do something I would have otherwise thought outside of my ability, Ronald McDonald House put my family up on our first trip out to CA for a three plus week stay and FACES donated money to enable our expensive medical travel. I thank God for the empathy and kindness he has out into the hearts of others. 

An update on Genevieve

Genevieve is doing great. She is in daycare now & thriving. She has no issues with eating, drinking, breathing or sleeping. She will be in speech therapy as her language continues to develop since she does have risk for struggling to form proper sounds, but so far so good & she is making the sounds that require a palate which tells us all is working well. Her words can be difficult to understand but not outside of a normal range for a person her age & we will be watching her on that point. 

She did have her palate repair right before one year old & it went great. Recovery was very smooth & she didn’t look back once it was fixed. As soon as the healing was complete she could drink from a straw & loved her solid foods. 

Her jaw continues to grow naturally and we focus on making sure she is engaging her jaw muscles with chewing increasingly firmer foods like meat, raw fruits & crusty bread (as age allows). We are also encouraging nasal breathing over mouth breathing as this too will facilitate optimal jaw growth as she ages. We are grateful that we were able to do the SOAP, opening the door for this natural jaw growth throughout her childhood & hopefully avoiding any future surgeries.