Lillian Sophia Smith – her story
Lilly was born on July 24, 2012 with Hypoplastic Left Heart Syndrome (HLHS) at Maine Medical Center in Portland, Maine. She was immediately transported to Boston Children’s Hospital to be prepped for her first HLHS surgery. At three days old, Lilly received the first (Norwood) surgery to help reconfigure her heart so the only working side (the right side) could handle the load of a fully functioning heart. Learn more about HLHS here .
Lilly stayed in the hospital from July 24th to September 11th with Momma staying by her side every day. The rest of the family traveled back and forth and helped care for Lilly’s siblings (brother Emmit and sister Christine) so that Daddy could be there as often as possible. As preparation for Lilly’s first time spent at home, she had a feeding tube inserted (Gtube) to help her receive her nutrition and meds. Due to many medical and perhaps genetic issues, she was unable to feed from a bottle at this time. Even then we knew Lilly was a special girl with a special condition – unlike many had seen before.
After a couple of months spent at home with various doctors visits for oxygen issues, and developmental and physical growth not progressing as we all hoped for; she went back to the Barbara Bush Hospital in Portland in December 2012, then to the NICU (Neonatal Intensive Care Unit) at Maine Med. But they were unable to handle her case in the way she needed so she once again went to Boston Children’s Hospital at the end of January 2013. On January 30th Lilly received her 2nd HLHS surgery (Glenn procedure) and it seemed to go okay, despite her small size. However, in a couple of days she went into cardiac arrest with small seizures, leading to a massive seizure. The doctors did an MRI and determined that due to the Cardiac Arrest, she suffered a major stroke to her left side of the brain. This led to partial paralyzation to the right side of the body, arm, leg and yes the only side of her heart that was functional, the right chambers. With therapy and meds Lilly did regain some mobility with the right side limbs. Due to the stroke, Lilly was diagnosed with Cerebral Palsy. On March 1, 2013 Lilly went home again. In 2015 the Gtube was finally removed and Lilly was fully feeding by bottle and beginning to eat real food too.
Between March 2013 and January 2017 Lilly was in and out of the hospital and doctors visits for various issues with the feeding tube, medication, breathing, infections, growth problems. At 5 years old today, Lilly looks more like a 2 year old toddler and still can wear a size 24 months clothes.
Due to the stroke affecting the right chambers of Lilly’s heart, her heart function has continued to be a concern for her family and doctors; she was at a decreased function and wasn’t growing very fast. Because of these situations, Lilly was not a candidate to receive the 3rd HLHS surgery (Fontan procedure) nor eligible for a Heart Transplant. This wasn’t just because of her decreased heart function but also because of her small size (genetic testing could not be done, but is believed some genetic issues were attributing to Lilly’s slow growth as a child), and breathing issues with lung and airways – they didn’t feel she was strong enough to withstand the surgeries that most kids would be facing now.
In the last couple of years, Lilly’s doctors have tried to increase her heart function with beta blockers and other cardiac meds but met with no success.
In the past year Lilly's family have seen her grow and develop more than before. She started school this year, received her first wheelchair and walker, began to learn sign language and over the years has learned a few words.
In the beginning of October 2017, Lilly was home but experiencing breathing difficulties and swelling. Her oxygen level went down severely and she was rushed to the hospital on Saturday the 14th. Lilly had fluid overload (2 centimeters of fluid around her lungs that constricted them from opening for regular breathing). Due to her existing condition, Lilly’s parents and the team at Maine Medical agreed to a less invasive approach to reducing the fluid inflammation, with meds rather than surgery. This did begin to work and the swelling slowly decreased as breathing was coming back to normal (Lilly’s normal). She received an Echo test and it showed that her heart function had decreased even more from earlier this year. Her cardiologist explained that her heart was no longer capable of pumping oxygenated blood from her head down to her heart, lungs and lower body. Blood was being pushed back up to her head (valve regurgitation). This was why her body was filling with fluid and surrounding her lungs creating an emergency situation with her breathing.
The diagnosis came on Tuesday the 17th- due to Lilly’s condition she had a limited time left and she was put on hospice care. We were told she had perhaps a week or two at most. Lilly has surprised everyone many times in her life, defying the odds and smiling so often you can hardly believe how sick she is, so only time will tell. Her infectious smile and giggles make her a star not just in our eyes but the medical staff that care for her during her many visits to the hospitals and doctor’s offices.
Lilly’s family is asking for your help as they navigate these difficult times and decisions about hospital stays, hospice care, funeral and burial service expenses and adjusting to life after Lilly passes. Expenses pile up as life tends to keep moving - despite the fact that life seems to stand still when your loved one is so close to death and you want to be there every minute in support and love. You don’t often think ahead and save for funeral expenses for a child, even the sick ones because you keep on hoping and praying for a miracle and seeing small wins along the way as a sign that it’s all going to be okay. But sometimes it’s not.
If Lilly and her story have touched your heart like she has ours from day one, please consider offering a donation towards our goal in whatever amount is comfortable for you. If you choose not to at this time, a prayer of love, light and healing is a wonderful gift as well and we thank you.
Blessings and gratitude from Lillian and her family.
- Maggie Smith
- Sheila Fraser
- The Anderson’s
- Donna & David Brunette
- Matt and Teresa Simmons