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

Thomas Foster is your Heart of the Week! Thomas’ journey with CHD is told by his mom, Carlie.

Diagnosis: Double Inlet Left Ventricle.

Date of birth: December 3, 2016.

Diagnosed in-utero? 
Yes, Thomas was diagnosed in-utero at 20 weeks during genetic testing. Doctors said they would not have been able to detect his heart defect in a normal ultrasound, so it was a good thing we opted for a more comprehensive check.

Describe Thomas in 3-5 words: Full of love and life!

How many surgeries and/or procedures has Thomas undergone?
2 open heart surgeries, 1 catheter procedure, 1 colectomy, 1 ileostomy reversal.

What are the names or types of those surgeries and procedures?
12/22/16 – PA Banding OHS. When there is too much blood flow to the lungs, the pulmonary artery banding is done, which protects the pulmonary arteries from high blood pressure.

12/25/16 - Colectomy. Had to have 90% of colon removed due to necrotizing enterocolitis three-days post-op from the PA banding. This resulted in him having an ileostomy bag until he was big enough to have it reversed.

3/17/16 – Diagnostic catheter procedure to prepare for the Glenn surgery.

4/13/16 – Open-heart Glenn surgery. This operation involves redirecting oxygen-poor blood from the top of the body to the lungs.

6/2/16 – Ileostomy reversal. Surgeons were able to reconnect the remaining 10% of the colon and reverse the ileostomy.

Approximately, how much time has Thomas spend in the hospital?
Roughly 4 months

Is he currently on any medications? 
Yes, he is on a daily dose of aspirin that will most likely be on for the rest of his life.

Are there any restrictions he faces?
At this point, it is too early to tell. Many children with Thomas’ defect can face limitations with certain physical activities that may be especially exerting. There are also other considerations, such as having to make sure he is on a course of antibiotics prior to any teeth cleaning, due to the connections between dental health and endocarditis.

Do you have any surgeries/procedures currently scheduled?
Thomas has his next catheter procedure scheduled on May 24th to gather more information and data that his cardiologist here in Idaho will send down to his cardiothoracic surgeon in California. Based upon the data, the surgeon will schedule Thomas for his Fontan surgery with a date projected to be sometime this September/October. The Fontan should be the third surgery to complete the process, which involves redirecting the blood from the IVC to the lungs.

Are there any worries or challenges you face as a CHD family?
As a mom to a heart warrior, I am constantly worried about the impacts of having a CHD on Thomas’ future. While we have been relatively lucky to not have too many complications or developmental issues, I am always hyper-focused on every cough, or making sure we reach every target developmental milestone. I worry about him getting older and having to explain his CHD to him, and how he will take it. I worry about him being limited compared to his friends and peers as he gets older and feeling lonely or frustrated that he can’t do the same things. Facing his third open heart surgery in a few months, my worries compound daily. I worry that he will be scared this time, because he was too young before to know what was going on. I worry that he will be in more pain this time, because he will be more aware of it. I worry that he will try to rip out his IV’s or tubes, because, well, he’s two and you tell me that a two-year-old won’t try to. I worry that he will feel like Mommy can’t help him, because this will be a pain that I cannot kiss away in an instant or snuggle him up tight.

Please add anything you want to share about Thomas!
Thomas amazes us every day. He gives the best kisses and hugs. When he wakes up in the morning he is smiling and then a non-stop ball of energy until he goes to bed at night. His development and growth are right on track, and we are excited to see what going to preschool next year will bring for him. There are days when it is hard, but there is never a day that goes by that I don’t realize how blessed we are to have a child who has forever changed us. Being a heart parent is complicated- it’s a mix of not being able to control so many things but then having to be strict about a lot of others; it’s having to trust doctors and their care for your child but also knowing that you are the ultimate protector and there are some days you just have to go “mama bear” on a nurse (sorry, we really do LOVE you) because your child has been waiting on his pain meds for over an hour; and it’s looking forward to the future but never taking for granted that it might not go as planned.  

About Double Inlet Left Ventricle

Anatomy: The left and right atrium are connected to the left ventricle instead of the left atrium connecting to the left ventricle and the right atrium connecting to the right ventricle. The right ventricle is often underdeveloped as well.

Complications: As a result of this defect, oxygen-rich blood and oxygen-poor blood are combined, leaving the body with a low oxygen saturation.

Symptoms: Blue skin, failure to gain weight normally, trouble breathing, swollen legs or abdomen, pale skin, poor feeding, sweating, rapid heartbeat, heart murmur, fluid buildup around the lungs, and heart failure.

Treatment: Double inlet left ventricle is treated with open-heart surgery to repair the defect and have each atria connect to the proper ventricle. Several surgeries may be needed in order to make the heart work effectively.

Prevalence: approx. 5-10 out of every 100,000 live births.

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