Tallia had a perfectly healthy sounding heart throughout pregnancy and was delivered in a beautiful natural home birth on May 8th, 2015.
She is extremely blessed to have such an observant and protective mother who was concerned about her breathing. On her 8th day of life she was brought to the children’s hospital in respiratory distress. It was discovered there that she had gone into shock because she had Hypoplastic Left Heart Syndrome. This came as a complete surprise as it was not discovered on ultrasound.
Tallia’s mother’s were devastated as her future went from natural and no doctor’s visits to close observation and biweekly doctor’s visits right before their eyes. Tallia had her first heart surgery on May 20th, 2015. She was in the hospital for 4 weeks. She had a few complications but got to go home on just aspirin. We just listened to rounds. Her heart function is poor and her tricuspid valve leakage is now severe. They are increasing both medications and now plan on doing the surgery in a month. Instead of getting the basic Glenn they will also have to repair the tricuspid valve. She went back to the hospital about 6 weeks later because she was inconsolable and had low sats and blue feet.Her heart was analysed and looked to be about the same function but it was enlarged and wasn’t remodeling from the damage due to being in shock. They started her on a diuretic and blood pressure medicine. She came back to the hospital 3 weeks later for a routine heart cath where they determined her heart function is poor and her tricuspid valve leakage is now severe. They increased both medications and now plan on doing her second surgery in a month. Instead of getting the basic Glenn procedure they will also have to repair the tricuspid valve. The cardiologist also told us that if her heart does not begin to remodel and twist after the next surgery then they will visit the idea of a heart transplant.
In April of 2018 we took Tallia to Joe DiMaggio children’s hospital for a routine heart checkup as we had been doing every 3 months for the past 2 years. We discovered that the valve in the good side of her heart had gone from having a moderate leak to a severe leak. It was at this point that the option of transplant was introduced to us. We scheduled a consultation with the transplant team as quickly as we could and went through the 2 day evaluation process to have her listed and place our family into a no travel status as that call can come at any time.
Once on the heart transplant list Tallia was closely followed by our team with checkups once a month. The month of January became very unbearable for us as well as Tallia. She had constant stomach pain that made her not want to eat anything. When she did eat it came back up quickly. At her January appointment she had lost a concerning amount of weight and we were told that it was time to start her on milrinone. Milrinone is an IV medication that is used in heart failure. Due to her age and activity level the team felt it best to have her stay in the hospital on this medication. She was admitted on Jan 23rd to sit and wait. This period of time is one of the most stressful a family can go through. You do not know when the perfect heart will be available, whether it will come in time, and there is the constant reminder in the back of your mind that you are waiting for another family’s loss to help yours.
After 3 weeks Tallia’s surgeon came to us with excitement that he had a near perfect match for her. About 2 hours later we were told that something fell through and they were not able to provide details but we just had to keep waiting. On April 4th we were told there was another offer that was better than the first but we did not have high hopes as we had already been through the first offer and knew that nothing is guaranteed. She received her new heart at midnight on April 5th. Surgery did not go as planned
and she come back on a bypass machine. Through a heart catch they found the problem and she sent for another surgery 2 days after transplant. This second surgery did not get her off of ECMO and she continued to bleed 150 cc per hour for the next day and a half due to pulmonary hemorrhage. This was the most scared we have ever been for her life.
One more surgery, 4 heart catheterizations, 1 month of intubation, and 2 more weeks of recovery later we have our little girl home and she continues to flourish ever day. She has a better appetite. She can run up and down the stairs. She has a new baby brother that she loves to hold. She has so much more more energy and brain power than we have ever seen her express. We truly feel blessed to watch her grow, learn, and love greater than ever before.