Lilah's ToF Story
Donation protected
Lilah Jean was born July 12, 2018 with a congenital heart defect called Tetralogy of Fallot with Absent Pulmonary Valve plus Interrupted Aortic Arch. This set of heart defects has never been documented before now. Lilah’s parents knew that she would be born with heart defects but did not know the complexity of their daughter’s anatomy and it seems like they are constantly learning about new issues with Lilah’s heart and airways.
As of October 12th, Lilah is 3 months old and has never been home. Since her birth there has been no shortage of ups and downs. Lilah has had 2 open heart surgeries, 2 blood clots, 2 blood infections (sepsis), a broken collar bone from birth, a collapsed lung, respiratory infection and internal bleeding in her stomach. She has also had a surgery to place a PEG-J tube (feeding tube) and countless IV’s, x-rays, ultrasounds, CT’s, MRI’s, lab pokes, intubations and more. There is simply no end in sight.
Lilah had her first open heart surgery at 6 days old where she underwent her full repair. That surgery lasted an excruciating 8 hours. It was after that surgery that we learned Lilah had major airway compression because of her massively enlarged right pulmonary artery. Her second surgery was at a little over 2 months old to help remove the compression from her bronchus in hopes that she could avoid a tracheostomy. The surgery was successful in terms of helping her airway but it unfortunately reversed some of the progress that her heart made after her first surgery.
Two weeks after her second heart surgery, Lilah went in to have a stent placed to help with blood flow. It was there that her Cardiologist discovered Lilah’s left pulmonary artery is practically nonexistent. This means that her left lung is getting only 1% blood flow. Her medical team is trying to determine the next step to take in order to increase the blood flow to her lung and hopefully get her home.
During Lilah’s hospitalization, her Mom (Sara) has been unable to work so that she can continue to be by Lilah’s side as her biggest and best advocate. In the evenings, she goes home to be with her fiancé and their other children (Isaak age 14 and Elena 15 months). Lilah’s Dad (Jake) is the sole provider at this time but with the medical bills rolling in, they are barely staying afloat. Unfortunately, since Lilah is so complex, she will need multiple surgeries as she gets older. In addition to that, Lilah has a compromised immune system, so she will not be able to attend daycare when she finally goes home.
If you are able to donate, please think of helping this family who is going through the most heartbreaking and difficult time of their lives. If you are unable to donate, please share and pray for this little warrior.
Thanks for reading!
As of October 12th, Lilah is 3 months old and has never been home. Since her birth there has been no shortage of ups and downs. Lilah has had 2 open heart surgeries, 2 blood clots, 2 blood infections (sepsis), a broken collar bone from birth, a collapsed lung, respiratory infection and internal bleeding in her stomach. She has also had a surgery to place a PEG-J tube (feeding tube) and countless IV’s, x-rays, ultrasounds, CT’s, MRI’s, lab pokes, intubations and more. There is simply no end in sight.
Lilah had her first open heart surgery at 6 days old where she underwent her full repair. That surgery lasted an excruciating 8 hours. It was after that surgery that we learned Lilah had major airway compression because of her massively enlarged right pulmonary artery. Her second surgery was at a little over 2 months old to help remove the compression from her bronchus in hopes that she could avoid a tracheostomy. The surgery was successful in terms of helping her airway but it unfortunately reversed some of the progress that her heart made after her first surgery.
Two weeks after her second heart surgery, Lilah went in to have a stent placed to help with blood flow. It was there that her Cardiologist discovered Lilah’s left pulmonary artery is practically nonexistent. This means that her left lung is getting only 1% blood flow. Her medical team is trying to determine the next step to take in order to increase the blood flow to her lung and hopefully get her home.
During Lilah’s hospitalization, her Mom (Sara) has been unable to work so that she can continue to be by Lilah’s side as her biggest and best advocate. In the evenings, she goes home to be with her fiancé and their other children (Isaak age 14 and Elena 15 months). Lilah’s Dad (Jake) is the sole provider at this time but with the medical bills rolling in, they are barely staying afloat. Unfortunately, since Lilah is so complex, she will need multiple surgeries as she gets older. In addition to that, Lilah has a compromised immune system, so she will not be able to attend daycare when she finally goes home.
If you are able to donate, please think of helping this family who is going through the most heartbreaking and difficult time of their lives. If you are unable to donate, please share and pray for this little warrior.
Thanks for reading!
Organizer and beneficiary
Anna Jinkerson
Organizer
Shakopee, MN
Jake Robinson
Beneficiary
