COTA for Sadie Rose Strong

Our Story

Sadie Rose is a precocious sweet girl with a feistiness to her personality. She’s in TK but is very bright and attentive. She loves singing and her favorite thing to sing is ‘Be Thou My Vision’. Even though she doesn’t crave the lime light, she is often the loudest voice in kids choir without realizing it or having an ounce of self consciousness. She recently heard a harp and loves the sound – specifically the harp playing Bach’s ‘Toccata and Fugue’! She loves dancing and often is the only child in Sunday school dancing to the music. And she loves being silly, especially when it makes people laugh. Her older sister Colette is usually on the receiving end of that silliness and eggs Sadie on with every sound of laughter. Sadie loves bragging about Collie to all the nurses and doctors or anyone that will listen.

Sadie loves playing the piano and likes playing the 3 songs she’s learned for anyone that will listen; ‘Mary Had A Little Lamb’, ‘B-I-NGO’, and ‘Twinkle Twinkle Little Star’. She learned the first 4 measures of ‘Be Thou My Vision’ by ear and loves to play and sing it together. She is full of life and imagination and has a loyal and kind heart. She is quick to stand up for someone who she thinks needs help. And just like her older sister Colette, she brings joy to peoples heart without trying or knowing it.

On September 20 Sadie Rose had her first episode. During an episode she struggles to draw her breath, has to lay down, her heartbeat races, her oxygen drops and she turns pale. Usually it lasts for 30 – 45 minutes and she slowly comes out of it. We can tell when she’s starting to come out because she’ll start being a little silly.

After several of these “episodes” we were referred out to a pediatric cardiologist who found that the pressure in the right side of her heart was elevated. We were immediately referred to CHLA where her “episodes” were properly identified as pulmonary hypertensive crises. After being admitted to CHLA, Sadie was diagnosed with an extremely rare form of pulmonary hypertension called pulmonary veno occlusive disease or PVOD.

Pulmonary hypertension and PVOD effect both the arteries and veins in her lungs. It is extremely hard to treat because the medications used to treat pulmonary hypertension, which effects the arteries, actually making the PVOD worse, causing pulmonary edema. There is no real treatment for PVOD except for transplant. At the beginning of 2023 Sadie was transferred to Lucile Packard Children’s Hospital at Stanford and accepted into their transplant program and placed on the lung transplant list. At CHLA Sadie underwent a procedure to place an atrial flow regulator in her heart to maintain an opening between the right and left atrial chambers of the heart. This creates a high pressure pop-off to protect her heart. Here at Stanford she was also placed on a round of steroids, and the combination of the two treatments have stabilized her. Praise God! At this point she is an ideal candidate for transplant. The goal is to keep her as stable as possible and transplant her as soon as possible in order to beat the progression of the disease.

After three weeks inpatient she was discharged and is currently staying at the Ronald McDonald house in Palo Alto to be closely monitored outpatient.
Sadie was placed on the transplant list as inactive, meaning she will be accruing time but not receiving offers, so she can get caught up on some important live vaccines that she will not be able to get post transplant. After she develops antibodies to these she will be made active on the list and will be able to receive offers. We have been told it can take 6 months to a year, sometimes longer, to receive a perfect match. After transplant she will have to stay local for at least 3 months so that she can be closely monitored.
We continue to put our faith in the Lord and trust in His promises. We are so grateful for all the prayers and love and support from our community and loved ones!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.