Liam’s Story

Our son Liam Finn Young was born with Trisomy 21 on October 15th, 2022 at Renown Hospital and was transferred to Lucile Packard on October 17th, 2022. A few days later, Liam's doctors told us that he wouldn't make it through the night, but Liam revealed his warrior spirit, showing us all his will to survive. Liam was a strong, courageous, beautiful, music-loving boy. He fought for nearly five months leaving this world on March 12th, 2023.

When we arrived at Stanford, Liam’s team confirmed Renown’s diagnosis and informed us that Liam was ductal dependent and needed a stent and that while he was awaiting this medical procedure that “ they were going to place Liam on PGE, a drug which keeps the ductus open”.

In December, contrary to what the medical team had advised concerning the stent, they removed Liam from the PGE without providing him with a stent. Shortly thereafter Liam began to exhibit the adverse effects of this decision, having multiple desaturation episodes throughout the day, that the team of doctors would refer to as TET-like spells.

It was abundantly clear that Liam needed the stent, yet his medical team continued to refuse to do the procedure that they acknowledged he needed.

Additionally, the medical team continued to take Liam off ECMO candidacy for situations where ECMO is routinely used. They even talked about sending Liam home saying “he was doing so well”, despite having these desaturation episodes when having tachycardia (increased heart rate).

I questioned the rationale of Liam’s medical team’s decision, on sending Liam home without repair knowing that infants with AVSD Tet-like DORV (which Liam was diagnosed with) typically do not survive longer than 28 days without repair.

I was assured that Liam would do fine at home and the team continued to endorse this false narrative.

The medical team not only refused to repair Liam's heart they also refused to put him on the transplant list. Still, Liam continued to show his resilience as he fought through multiple infections from his lines and tubes, exhibiting his will to survive each and every day.

During our five months at Stanford’s, Lucile Packard, I saw countless babies younger than Liam being put on ECMO, being repaired successfully with open heart surgery, and babies having transplants. The only difference between Liam and those other children was that Liam had been born with Trisomy 21. The doctors of course denied this medical bias but their actions or lack thereof, proved over and over again that they were discriminating against our son. Eventually, Liam's nurses would confirm this when they informed me that “the reason Liam’s doctors kept taking him off of ECMO candidacy was that he would never qualify for a transplant due to his genetic defect”.

Liam wasn’t defective, he was genetically different.

Once this medical bias was confirmed I called a meeting and requested that the team send Liam’s medical records for a second opinion, to five other hospitals, that were known for routinely and successfully performing the type of surgery that Liam needed, on babies younger than him, so that I could get Liam transferred to a hospital willing to give my son a chance at life.

The doctors balked at my request but assured me that they would send Liam’s records. Instead of sending Liam’s medical records as promised, I discovered that the medical team spent the next two nights making addendums to Liam’s medical records, at all hours of the night.

For over a month I pleaded with his doctors to do something, anything, as it was clear my son's heart was failing and his health was rapidly declining, but they refused to do anything. Liam fought valiantly, clear to the very end, ultimately dying from cardiogenic shock.

The morning of his passing it was pouring as if the heavens themselves were crying, I heard the doctors whispering. I ran over to my sweet boy. My ten-pound boy was puffy and at least thirty pounds, filled with fluid and methyl-blue. Blue seeped out of his nose and wounds. When I looked at my son, I knew, I knew his heart was failing. His blood pressure kept dropping and he kept desaturating. How could they do this to him and not be willing to help in any way? He was suffering and their unwillingness to help forced me to have to make a decision, that no parent should ever have to make. In Liam's final moments, I promised him, I would make it my life's mission to stop this type of discrimination from happening to any other baby and I apologized to him, for failing him. He was such a beautiful, loving, soul. He deserved better. He deserved a chance at life, and I am so incredibly sorry that I could not protect him.

I am angry! I feel guilty, that it took me so long to realize the truth, but most of all I am hurt, and I am overwhelmingly sad.

I'm disheartened that not everyone recognized the beautiful, sweet, strong and courageous boy my son was, and I'm overwhelmingly sad that my beautiful, sweet precious warrior suffered the inequities of medical bias, and that this type of discrimination still blatantly exists towards those with genetic differences.

After Liam took his last breath, I looked out the window, crying in agony still holding my sweet baby boy the storm had finally passed there was a rainbow out. Liam, my mighty warrior was my rainbow baby. He was a twin, his sibling died in utero. In that moment I knew Liam was no longer in pain and was finally with his baby brother. I'll carry Liam forever in my heart as I honor my promise to him.