Every year, 100,000 babies don't make it to their first birthday because of CHD.
Theo Marley | Heart Warrior of the Week

Name: Theo Marley Solomon-Holder        

Heart defect(s): Ventricular Septal Defect (VSD)

Date of birth: April 2nd, 2016

Diagnosis: Theo wasn’t diagnosed until he was about 8-weeks-old, just days before we were about to get on a flight to the Dominican Republic.

Described in a few words: He is crazy, funny, mischievous, loving, and strong.

Surgical history: 1 open-heart surgery – pulmonary artery banding procedure at 14 weeks. Theo was in severe heart failure and therefore wasn’t a candidate for a full repair so they placed a band to treat hypertension caused by the holes in his heart.

He has also had emergency bowel surgery for intestinal mal-rotation with volvulus, rectal biopsies for Hirschsprung’s disease, gastro surgery to have a peg fitted, and then another surgery to have his peg changed to a button.

Time spent in hospital: With all of the time he has spent in hospitals due to multiple appointments with many different specialists, it is hard to say exactly how much time in total.  The first year of his life was by far our hardest; from 9-weeks-old, he spent most of his first year of life in the hospital.

Medications: He will be Lisinopril and Frusemide long-term. There are also a lot of other medications for his other health problems and his peg feed.

Restrictions: Theo gets really tired, even though at times it seems he tries his best to keep up! We have to be careful to ensure he takes his down time and gets regular breaks for rest. He can’t do contact sports and we aren’t allowed to fly for more than 4 hours, but we still manage a lovely holiday!

Future surgeries: Theo will need more surgeries in the future, we are uncertain when they will be as it’s too risky to do at the moment. He will also most likely need to have a hybrid surgery due to the complexity of his heart.

Worries you face being a Heart Family: The fear of losing Theo is something that never leaves us, I wake up most nights in a panic and place my hand on his chest to feel his little heart beating. Theo also has feeding issues and due to his hearts condition, needs every calorie so he is fed with a G-tube. That is particularly hard because he just wants to be a normal little boy and he notices more and more everyday about the differences between him and his friends. We also struggle with the fact that CHD just isn’t as recognized as it should be, the funding is limited and our children aren’t recognized as being sick children.

What inspires you about Jacob? 

His fighting spirit and that nothing ever gets in his way. To look at him you would never know the struggles he deals with every single day. You would never know how fragile his heart actually is.

Theo is just incredible, his smile is infectious and we call him the ASBO kid because he literally does not care about anything, he’s a little whirlwind! But, I think if he wasn’t like that he wouldn’t fight like he does. To know Theo is to love him. He also has the most amazing sounding murmur that I listen too when I lay next to him.

About Theo’s Heart

Ventricular Septal Defect (VSD)

Anatomy: This defect occurs when the heart’s inner wall (septum) that separates the left ventricle from the right ventricle has a hole or multiple holes in it. 

Complications: This hole allows oxygen-rich blood from the left ventricle to mix with oxygen-depleted blood from the right ventricle, resulting in a lack of oxygen circulating throughout the body.

Symptoms: Bluish tint (cyanosis) to the skin, lips, and fingernails, along with poor feeding, poor weight gain, and fast breathing.

Treatment: Most VSD’s close on their own with time, but larger ones will require catheterizations or open-heart surgery where a patch is placed over the hole.

Prevalence: This is the most common CHD, accounting for 25-30% of all congenital heart defects. It occurs in ~2-5 out of every 1000 live births worldwide.

June 05, 2020 by Lani O'Gorman



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