What Tia Wilson and her son Gavin have been through is unimaginable and a true testament of faith and strength.
Born with hypoplastic left heart syndrome (HLHS), Gavin, who is just 6, has had over 40 surgeries, 8 open heart surgeries, 3 heart attacks and a stroke. Through it all, Tia has been by her son’s side, advocating for him and supporting him in every way.
The Weight She Carries reached out to Tia to share her experience. This is her story:
Tell us about yourself! Who is Tia Wilson in a nutshell and what drives her?
Well, I was born in Detroit and moved to Ohio at the age of 9. I was an only child and grew up poor. I’m currently 32 years old with one son, Gavin Wilson. I work as a Lab technician and cosmetic chemist. Currently I am building my life back up, launching my cosmetic manufacturing company and enjoying every moment with Gavin. I’ve been through some very traumatic situations in life. With time, I’ve learned to teach myself a new way of thinking. I enjoy traveling, outdoors, cooking and science! My ambition drives me as well as my son. I thrive off of bettering myself! I want a better life for my son and I.
Your son, Gavin, has faced a number of health challenges in his short life. Can you tell us what those challenges have been?
It’s an amazing feeling becoming a mother for the first time. I was so elated, then, all of a sudden, I was told the worst news that any parent would’ve ever wanted to hear: my child was born with a heart condition. My miracle child Gavin was born with HLHS.
I didn’t want to believe it; however, I knew that Gavin and I were going to face this head on. After 4 open heart surgeries, including one heart transplant, life was great! One year later, Gavin started getting sick. So, on August 17th he was admitted to Cincinnati Childrens. We couldn’t figure out what was wrong. He went in for an MRI on the 24th and had his first cardiac arrest (heart attack). It took approximately 30 minutes to resuscitate him.
He completely recovered on his own. Later, he received an MRI with no complication. This showed that there was some scar tissue that completely surround his heart like an eggshell. He then had open heart surgery to remove this fibrosis tissue. The surgery was successful, but some of the tissue had grown into his heart. This is a case that they have not seen in 20 years. It’s very rare and the cause of this is unknown.
Then, on September 12 – his birthday – he had his second cardiac arrest causing him to need ECMO (life support). After his organs recovered, he was then removed off of ECMO on September 17th and put on a ventricular assist device (VAD) called CentriMag. The machine basically does the work of his heart.
He’s made great progress with his device switch. He was then switched from the CentriMag to the Berlin Heart. This allowed him to move about and then qualify for another heart transplant. As of December 4th, 2017, Gavin was listed as a 1A heart transplant recipient! As time went by, we planned a 1/2 birthday for him since he had a heart attack on his actual birthday. The party was March 9, 2018. The very next day, March 10, Gavin had a stroke. Because of this he was removed from the transplant list.
Once he recovered, he was added back to the list and received his second heart transplant March 26, 2018!! Gavin recovered with a fight! There was a time during his recovery that his incision became infected. But my fighter recovered from that as well.
We were discharged from the hospital August 17, 2018 – just shy of being admitted for one full calendar year. Things were going great. Then Gavin started to get sick again. This time with pneumonia. We were in and out of the hospital 3 times for this. Turns out my miracle baby had coronary artery disease. This is a disease that usually occurs 10+ years after having a transplant. On December 15, 2018, my baby had another heart attack. He recovered well. The doctors say that they don’t know how long he is going to live. But GOD!! Gavin is full of life and energy! The most charming 6-year-old you could ever meet!! He goes to school and plays as he should. No one would ever know there was anything wrong with him if I didn’t tell them.
How did you deal with the emotional turmoil of the extensive treatment he needed? How were you able to stay strong for him?
I really leaned on God and Gavin’s strength for my strength. I prayed against everything the doctors said. There were times that I was really sick, angry, absent and depressed. There were many times I had to ask my 5-year-old son if he wanted to keep fighting. And every time he eagerly said yes! He was the happiest through it all! That is how I stayed strong!
What were your darkest days like?
My darkest days were filled with drinking, crying and screaming. His father and I would argue often. He has been incarcerated for the past 4 years, so there was so much stress because he couldn’t do anything about the situation. I saw a psychologist who was helpful at times, but I felt she did not understand. She would just give me meds for when I needed to sleep and meds for when I was sleeping too much. Gavin’s smile kept me from jumping off the ledge and going to hell. I cried so much I had no tears left. I felt hopeless. I had no job, no home, barely any support and my son was fighting for his life. I wouldn’t wish that pain on anyone.
You mentioned in your Facebook post that you had no home of job a year ago. Take us through that experience.
When Gavin became ill in August 2018, I was a licensed cosmetologist and had been for 10 years. For months, I drove back and forth from Cincinnati to Dayton, trying to keep my clients and my apartment. After he had his second heart attack, I let everything go. I lived at the Ronald McDonald House for the remainder of his hospital stay and told all of my clients farewell. To pay my car note and insurance, I would Uber and collect donations. This was really hard for me considering that I’m used to providing for us solely.
What has the experience taught you?
FAITH IS REAL! It seems so cliché’ when everyone says keep the faith. But it is not until your faith is truly tested that you realize the power of God. This situation has taught me to smile more and enjoy all of life’s little moments. No matter how hard things got, I stayed strong. I felt broken in private, but I never let them see me sweat. Daily, I educated myself on my baby’s procedures, medications and diagnosis. I talked to the doctors as if we worked together. Currently, the entire team that saved my baby’s life commend me on how I handled the situation. They can’t believe it.
What words of encouragement do you have for a mother of a child with a severe health condition?
Never give up on your baby. It is hard, but your child cannot see you cry or be in fear. They thrive off of your energy. Don’t let the doctors have the last say. Speak up! Speak boldly on your baby’s behalf. Educate yourself so that there are no unnecessary tests or procedures being done. It is ok to break down. Do it on your own time, not the doctors time and not the time you spend with your baby. Whatever your religious beliefs are, exercise them daily!!
To keep up to date on Gavin’s progress, visit his Facebook page: https://www.facebook.com/Gavinsstory/
To support Gavin’s medical expenses, visit: https://www.gofundme.com/2ja2av43?fbclid=IwAR3a6BTeuZh9aFksPKU6YJ8McGhJ_fam1Im-Vuz0SxA0yV4SX7uan0ZjQEs
