Triton's Story: Parent's Letter Project Aortic valve stenosis- Triton’s mom

My son was diagnosed with aortic valve stenosis (AVS) at 3 months of age. He was short of breath and turned blue around the mouth when he cried. I took him to the pediatrician 14 times from the time he was 2-weeks-old to 7-weeks-old because my gut told me something was wrong with my son. We were on an HMO at the time and had to be referred to a specialist. Finally, I had it. I went behind my husband's back and took my 3-month-old baby to see a cardiologist. I was by myself that day and they diagnosed him with aortic valve stenosis. My life was shattered. I was not even able to drive myself home and I had a $3,000 bill because I was never able to get the referral to see a cardiologist.

You may feel like your world is crumbling beneath you, but I am here to tell you that you will find the strength to do anything you have to do for your child. I promise you. My son has had nine surgeries/procedures and we just found out today that our next move is a new pulmonary valve. My son is a happy an active 11-year-old kid who loves life. This will change your life forever but if you try to teach your child that this was chosen for him or her for a reason, I have found that it really helps.

My son has been through so much in his very short 11 years. He is grateful for the smallest things in life. It is really special to be a part of these kids' lives. They need so much support from you and reassurance that everything is going to be fine and don't ever feel guilty when you are having a hard time dealing with your feelings. Stay close to your family, your spouse, your friends, and whomever will support you and your family even if it is a therapist (I have seen one for years). This is a condition that is manageable. It is never easy to see your sweet baby hurting or in the hospital, but please know how lucky we are to know our children have the option of surgeries.

I promise you it will be a crazy ride and an absolute emotional roller coaster but you will get through it. I know you will get through it because I have been doing it now for 11 years and I never thought in a million years I would be able to do all of the things I have done for my son. There are so many great doctors out there who can get you in touch with great support groups and special summer camps. There are great things out there for these kids. I am sure you feel very uncertain about how your child's future will pan out. Don't even fret. They will go to school, they will participate in minor sports, they will have friends and create relationships (with a few surgeries here and there along the way). This will make them the people they are supposed to become. We have been to children's hospitals from California to Florida. My husband is in the military so we have been everywhere. Know that you will be fine and are a great parent because God makes no mistakes, he would not put this on you if you were not supposed to be that baby's mommy or daddy. Live, laugh, love.

Sincerely,

Triton’s mom, Melissa

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