Heros for Liam Road to Fontan

Liam was born with HLHS, a congenital heart defect that causes him to only have half a heart. Without surgical intervention HLHS is fatal. Most children born with this condition will undergo a series of 3 palliative open heart surgeries; the Norwood during the first week of life, the Glenn at 4-6 months and the Fontan around 4 years. 

 

To say that Liam was born to fight would be an understatement. At birth he was only given about a 20% chance at surviving, which is less than average, due to him having a restricted atrial septum. That extra defect caused him to have higher pressures on his lungs before birth and often these babies can be too sick for intervention at birth.

However that was not the case for Liam, he was born pink and ready to go. He needed a stent placed about 2 hours after birth, and 5 days later he went back to the OR for his first open heart surgery the Norwood. Everything was going perfectly textbook and he was on track to be discharged by Christmas. When his progress began to stall, the drs suspected infection but did not know the source. He was started on antibiotics, meanwhile on new years eve it was time for his dad and older brother to return home for work and school.

On January 2nd around 4:30 Liam's oxygen dropped suddenly and his heart stopped, thanks to God and his mercy, Liam's surgical team was in the next room. After 30 minutes of cpr he was placed on ecmo(life support). It was discovered that the staph infection they had detected was in fact on his heart near his shunt. To further complicate things he began showing signs of seizures, and a CT showed that he had had a stroke that had caused damage to both sides of his brain, only time would tell what level of impairment he would have. 

It was decided that he should go back to the OR for cardiac intervention. The surgery was expected to take 6hours it actually took 14 hours. Afterwards his surgeon was unsure how long he would survive or if he would be well enough for the next surgery that would allow us to return home 

But Liam has never followed expectations, he made the biggest comeback ever and recieved his Glenn on April 9th, and after a month of recovery he was discharged May 8th just in time for mother's day. On June 6th 2019 We made our journey home. And for the last 3 years have enjoyed so much stability, love and growth as a family.

Liam was officially diagnosed with cerebral palsy shortly after coming home to Alaska. Due to his therapy needs I became a stay at home mom and Liam has made incredible progress, his biggest achievement was becoming and independent walker last February after his 3rd birthday. 

This summer Liam will return to Houston, TX for his 4th and hopefully last open heart surgery, our family plans to to remain in Texas until he is 6 weeks post op, funds raised will be used to help offset the added costs of living/travel as well as any unexpected bills/situations. 

Please continue pray for us as we enter this next chapter of Liam's journey, and thank you everyone who has already given so much in prayer and support over the past 4 and a half years.