Help Cherie, Adam, and Sam Stein

*Update from Cherie*

On Saturday, August 12th, Sam was able to come off life support.

He was stable for 36 hours but his body started to shut down on Monday morning at 3am.

He passed away in his mother’s arms on Monday night at 7:30pm — it was his 3 month birthday. He is at peace now and no longer suffering. We are irrevocably changed by our sweet boy and his bright spirit.

To all who supported and lifted us during this impossibly difficult experience in our lives — we thank you.

Everything that has been raised for Sam’s care will be used to honor him. We will continue advocating for Sam, his community and all who are vulnerable.

——-———————————————

Cherie and Adam are good friends of mine and I can’t even fathom what they’ve been through these last few months with their son Sam. Please consider helping and supporting them. Sam’s story is below. If you can’t help financially, I know they would appreciate your prayers for their little fighter. ❤️

Samuel Dean Stein was born May 14th, 2023 on Mother’s Day.

While in utero at 11 weeks gestation, Sam was diagnosed with Down Syndrome after the parents completed genetic testing. At week 17, an anatomy scan revealed two heart defects — Tetralogy of Fallot and Complete Atrioventricular Canal. Over 50% of children with Down Syndrome have a heart defect of some kind. The cardiologist confirmed that at 3-6 months old he would need surgery to repair his heart. Sam’s defect combination was not as common but was given a 95% success rate. His condition and growth was monitored through weekly ultrasound appointments during the third trimester to make sure his condition didn’t worsen and that he remained safe.

After his birth, Sam was looked after in the NICU at CHOP and released to come home with his parents a week later. However, at just 5 weeks old, two days after Father’s Day, Sam was rushed to the ER at CHOP for a severe eye infection. Upon taking his vitals, the team found that his oxygen saturation levels were very low and he was immediately admitted to the hospital. Something that was not evident while at home.

Over the next month in the hospital, it became clear that his low oxygen levels were related to one of his heart conditions which had begun to worsen. Soon after, it was determined that Sam would need his surgery earlier than originally planned. At 2 months old, on July 12, 2023, Sam underwent a triple repair. Ten hours later, as the parents stood and watched at his bedside, Sam went into cardiac arrest — the doctors performed chest compressions on him for 50 minutes. An hour later, Sam was placed on ECMO, a form of life support.

Over the next few days, the care team attempted multiple trials to turn off the life support. The last trial was promising and Sam was taken off. But after 14 hours, his levels plummeted. Fearing another cardiac arrest, the surgical team was called in and Sam was placed back on life support.

The following week, a catheter procedure was done to investigate the heart repair and current function of the heart. The repair looked fine and it was hypothesized that the right side of his heart was too muscular and struggling to push blood to the lungs the way it should after surgery. Hoping some time would resolve this by allowing his heart to rest while on ECMO, his pacemaker was placed and his chest was closed up.

Another trial to turn off ECMO was attempted a few days later without success. On July 28th, another catheter procedure was done, with a plan of action to alter the repair. Sam immediately went back into surgery and came out 13 hours later, off ECMO.

His levels were being managed for a number of hours through the use of blood pressure medications such epinephrine. But in the overnight hours, Sam’s levels started to drop. Simultaneously, a head ultrasound that was done at 10pm the night of surgery showed a blood clot in his brain. Sam had a stroke and seizures started into the morning.

That morning, after trying to stabilize him with high doses of blood pressure medication, the parents were given the option to go back in ECMO. Sam was placed back on life support and given a 20% chance of survival.

The following day, Sam’s kidneys began to shut down and he was placed on dialysis. Simultaneously, his fingers and toes began to turn dark purple/black. A result of blood pressure medications, which constricted the blood flow to his extremities when the body was trying to save his vital organs — his heart and his brain. It is unclear at this time, if Sam will require amputations to his fingers and toes due to the decisions that were made. But it is likely some may be lost on his left hand due to the deteriorating conditions in the week following his surgery.

Sam’s seizures continued for a few days and were later stabilized with medication. He also suffered an additional stroke in that time. Multiple cat scans were done and showed no major damage, if any, to his brain.

At this time, Sam remains on life support and dialysis.

At the guidance of the cardiac staff at CHOP, Sam underwent 3 major surgeries in 2.5 weeks. This would be hard on any adult, let alone a small child.

No child or parent should have to endure Sam’s reality. His parents have spent 8-10 hours each day, every single day with him in the hospital since he was first admitted on June 20th, 2023. They are tirelessly fighting and advocating for Sam’s life, through the insurmountable stress and emotional agony.

Sam has touched so many people’s hearts and lives, as early as before he was born. The light within this precious boy is immensely bright and his spirit is so incredibly strong. Anyone who has met him, is won over by his sweet personality, laid back demeanor and zest for life. He is a fighter through and through and his parents want nothing more than to bring this sweet boy home to give him a life of wonder, beauty and unconditional love with his family.