She did not know anything about her son’s heart condition during her pregnancy. Right after birth, they took him away from her and all she heard was his little cry. Meanwhile, they took her into recovery. She asked, and yet got no answers about the baby. The very next day, she gets a phone call in her room, at about 6:00 in the morning,
“mommy, your son is breathing too fast, he’s gonna have to be transferred to CHLA but I need an authorization over the phone”.
She was in shock and didn’t know how to react or feel. All she could say was, “Okay”, while tears ran down her face. The nurse informs her that the baby is sleeping and has to be closely monitored. Hours later, the newly born is transferred to CHLA. That’s when Astudillo finds out that her son’s heart is not okay, and he urgently needs open heart surgery(s).
“I didn’t know what to ask.”
A lot many doctors kept coming to her, giving her information about Sammy and how or what could have caused him to have the heart defect.
“DiGeorge Syndrome, your son is missing chromosome 22q. This will cause a developmental delay and this also caused him to have the heart defect.”
Tracy couldn’t even ask any questions. As tears ran down her cheeks still, she was in denial and disbelief. She was not able to process all this information. Little Sammy had his first open heart surgery while he was only 9 days old (February 3rd, 2011).
“Thank God! No complications and right after that he was growing and meeting every milestone. But then… the day that changed our lives forever came…”
January 16th, 2012, Sammy’s second Open Heart Surgery. His parents gave him as much love as they could, before he was taken into the OR.
“Please father, help my baby; help these doctors mend my baby’s heart.”
Endless prayers and hours later, doctors came out to inform the two, “Everything went well!!!” The next day, Sammy went through extubation. His parents were still giving their thanks, and then, everything crumbled.
When it all began
He just couldn’t stay still, there were so many involuntary movements of his body. Everything that Sammy knew, including his complete head control, was gone. It was as if Tracy had a newborn baby with her all over again. And the worst part of it all was that he didn’t know who this woman, crying and praying, was. “It’s Mommy Sammy, please come back to me.”
Days went by with no answers. Finally, on his birthday, January 25th, an MRI reveals to them:
“your son suffered a stroke and a part of his brain was damaged (globus pallidus), he will now have these movements (chorea) forever, he will not be able to do much for a very very long time because these movements will not let him.”
Six Years Later
After years of recovery, Sammy has actually progressed a whole lot. His movements are now controlled, he can use a little sign language, can wave and sit up with no support. One can see him blow kisses, rough playing with his daddy, clapping and scooting himself all over the house. He even dances, imitates snapping his fingers, takes steps in his gait trainer (in a straight line at that), feeds himself his little snacks, loves pizza and pasta (alfredo), and shoots basketballs in his ball pit.
The best part in his recovery is him knowing who his mum and dad are, and Tracy knows for a fact that he can feel their love and dedication for him!
What makes it harder
Many kids sometimes just stare because of all that is happening to him. Some are kind enough to play with him, but only for a little. It’s quite obvious that it has to do with Sammy being limited to doing what they can easily do. These involuntary movements are a challenge every single day. Especially when he’s mobile on the ground or is trying to stand. That’s when these movements take effect and make it harder for him.
Ask about family’s support, and Tracy says,
“not so much, many of them don’t know what it is to have a special needs baby, so to them it’s more of a “he’s so fragile, I don’t want to hurt him“.
A little sprinkle on top
The fact that they can see how much of a challenge it is for Sammy every single day, and yet he doesn’t give up, is what keeps the parents going. Seeing his self-motivation makes the harder days a little less difficult for them.
“He’s always smiling and we just add a little sprinkle to the top. That is what keeps us going. He has taught us how to live life, and always be happy because there is and will always be someone out there going through it harder than us and still moving forward head held high.”
Sammy met Kobe Bryant through the Make A Wish foundation and since then he’s been a huge fan. He loves no one else but Kobe Bryant. He sees him on the television and starts to yell in excitement. Tracy’s sister’s friend heard Sammy’s story and how he loves Kobe Bryant, so he wrote this poem for him:
I always wanted to be Kobe Bryant
I always wanted to be Kobe Bryant.
Our situations were quite different;
He wanted to touch the rim,
I wanted to touch the ground and just listen.
Sometimes I wish to be just like others;
But they are not warriors.
They don’t have what it takes,
To fight for your life day after day.
At birth, I was like you;
Could eat, stand and dance.
But at 4 years old, the syndrome hit;
And you wouldn’t have thought I have a chance…
Although my heart was failing,
It didn’t affect my love.
I kept up the spirit;
And asked for the man up above.
See, you were above the rim;
You could jump so high,
While I was in a walker.
But, I can still touch the sky.
Although I can touch the sky,
I wanted to touch the ground.
I wanted to walk;
I wanted to let out a sound.
I dreamt of screaming;
making lots of noise,
And then… I woke up…
Just silence and toys.
The meds are kicking in;
It’s time for me to stop.
I can finally touch the ground,
Now it’s time to work on my shot.
Edited by Preetika Dubey