Max, 6 months old

My name is Max Schneider.  

I am 6 months old.

I am Imperfectly Perfect.

 

When I was 22 weeks pregnant with Max, they found out he had double outlet right ventricle (DORV) and 2 VSD’s. After he was born my doctors realized that his heart was very unique, and that his defects were more complex than originally anticipated. He is currently waiting for a heart transplant and on a Berlin Heart to help him while we wait.

At 2 weeks of age, Max had his first heart surgery. A pulmonary artery band placed to help his lungs not get so flooded with blood. He went home on lots of medication and soon started to struggle with feeding. At one month old, he started to get too tired to finish his bottles and so he had a g-tube placed. At 3 months old his cardiologist noticed he had no blood flow through his mitral valve and he ended up having emergency open heart surgery to try and fix it. Unfortunately, after that surgery the function in the left side of his heart decreased and even with multiple heart failure medications, it never returned. His heart was very sick and unable to keep up with him anymore. His best option is now a heart transplant and he has been listed for a month so far. In his most recent heart surgery, he had a ventricular assist device called a Berlin Heart put in to help bridge him to a transplant because his heart was too weak to wait without help. Throughout Max’s short 6 months of life, he has had to be intubated multiple times, struggled through withdrawal off heavy sedatives, been given anesthesia for countless procedures and catheterizations and spent 80% of my life in a pediatric cardiac ICU.

Max’s life has been far from ordinary. When you find out your child has CHD nothing can prepare you for what you are about to face. No amount of research, planning, or preparation can make things easier as a doctor tells you your child needs surgery to survive. If CHD has taught my family one thing, it is that little things can be big things. We have learned to appreciate every moment. “Normal” things, like Max sucking on a pacifier, drinking from a bottle, or Max holding a toy are huge accomplishments!

                                                For any new parent out there, devastated by the news your child has CHD, hear me out.

There is hope.

The path your child takes may not look like everyone else’s, but you will find a way to make whatever your child needs, work. What starts off as strange becomes your normal, and you will learn to advocate like hell for your child. You as a parent will know your child better than any doctor or medical professional. You will be their voice when they can’t speak for themselves. Even when things seem so lonely in the world of CHD, there are always other parents going through what you are- so don’t be afraid to reach out! Find other CHD families in local support groups or through social media. Nothing is better than talking to someone who really understands where you are coming from. Find support in your family and friends and remember that even if they say the wrong thing, or don’t know how to comfort you, know they care. CHD should never be a battle anyone fights alone. The last piece of advice I would give anyone dealing with CHD is to never try to compare your families journey with CHD to anyone else’s. Every child is so different, and your child will march to the beat of their own drum.

I have been incredibly open about Max’s journey with CHD, and now his wait for a heart transplant because I want other people out there to know they aren’t alone. It may be hard for people to see the pictures I post of Max covered in tubes and wires, surrounded by machines and laying in a hospital bed- but the best way to get people to understand the reality of CHD is to show them. My desire to raise awareness of CHD, and now of organ donation, grows as I see Max fight hard to stay alive every day. All children with CHD want to be here, and as long as they keep fighting, we should keep fighting for them too.

 

Written by Mom, Cristina Schneider

February 2019