Support Olivia's Heart Transplant Journey

Olivia Rae Ingram

6/4/2024 - 5:09 pm.

Our lives changed forever.

Our sweet Olivia entered this world. Chris and I were overjoyed to be adding another addition to our family. She was perfect, 8.7 lbs and so much hair. While in the hospital, everything went well. At 24hrs after birth, the nurse preformed her routine oxygen saturation test - Olivia failed. Not concerning, we repeated in an hour - Olivia failed. One last re-test, this time Olivia was awake, and she passed! To be honest, Chris and I did not think anything of it at the time. Once she passed her third oxygen saturation test, the hospital discharged us to go home.

(6/7) Olivia had her first pediatrician visit. After checking her oxygen saturation, it was low. Our pediatrician prescribed a low-dose of oxygen. He was not too concerned at this time. It is not uncommon to need oxygen for a short time due to living at elevation. He said we will re-check next week.

(6/12) Another routine newborn follow-up. At this visit, the need for oxygen was still present. Our pediatrician now hears a murmur. Our thoughts were that a lot of children have murmurs. It is probably nothing and not related to the need for oxygen. We were referred to see a pediatric cardiologist just to be sure.

(6/19) After a two hour drive to the pediatric cardiologist, the nurse started with an EKG. The doctor came in to say that Olivia’s EKG looked very concerning. He recommended an echocardiogram. After reviewing her echocardiogram, we were immediately admitted to Community Hospital in Missoula. Our pediatric cardiologist explained to us what Hypertrophic Cardiomyopathy was and how it is affecting our girl. This is the first time he had personally diagnosed it in a infant this young.

We drove across the parking lot, not having any idea what was to come.

After checking in at Community Hospital of Missoula around 4:00 pm, we grasped quickly the severity of the situation. After an assessment from their team, Olivia continued on her oxygen and started beta-blockers. Beta-Blockers to help decrease her heart rate which at that time was upwards of 180bmp. She was having significant trouble breathing, due to her heart function. Through the night, her heart rate lowered some (not as much as they hoped), but her trouble breathing continued to progress. By the morning of Thursday, the doctors were confident enough to refer us to Seattle Children’s Hospital - Cardiac Intensive Care Unit.

(6/20) A few hours after being told we would need to go to Seattle, the life flight team had arrived for transport Olivia and I. Chris drove back to Butte to figure out logistics and pack our bags (for the second time in less than 12 hrs) before driving to Seattle. After arriving in Seattle, the ambulance ride from the airfield to the hospital felt like forever. Once at the hospital, it was so many doctors and nurses trying to navigate the seriousness of the condition. All I knew was that this is where she needed to be, at one of the best medical facilities in the country.

(6/21-6/23) Chris drove through the night making it to Seattle at 4 a.m. pst. At this point, we had no real answers as to the severity, possible treatment options, causes, ect. As far as Olivia’s treatment at this time, we were still using beta blockers to try to continue to reduce the work of her heart. These beta-blockers take time/days. The need for oxygen still progressed, we advanced in respiratory treatment with using a bubble C-Pap. During this time, we increased the beta-blockers. Over these few days, Chris and I were piecing together the possibility of a heart transplant, but still had hope that there was any other way.

(6/24) By Monday morning, our girl was still having trouble with her respiratory rate and her heart rate was not a low as the doctors would have liked. They avoided intibation as long as possible due to the size of her heart but it was what she needed. That has been by far the scariest hour thus far, not knowing how she would tolerate the procedure. Olivia did great. Instantly, she was more comfortable. With less strain on her lungs, her body began to settle. Her heart rate came down some and her respirations were good.

The cardiologist on staff explained that there is no way to ‘fix’ this heart. Typically, with this condition there is not a ‘fix’, there is management. We will continue to try our best to support Olivia, but ultimately she will need a heart transplant. With that confirmation, Chris and I knew that this was our only option to fight for our girl.

(6/26 - 6/28) Over the last few days, Olivia has become more unstable. With all the efforts done, as of this morning her team has recommended to put her on ECMO. As well as, expedite the transplant process to get her listed.

The biggest concern is the ability to keep her stable long enough to receive a transplant. It could take months and being on ECMO, complication risks are high.

Olivia has proved to be a fighter. She has quite a sassy personality, which we love!

Our family very much appreciates any and all support during this difficult time. Thank you!