CHD Warrior Story: Frank Zillins

The CHD Warrior submission below was received from parents Adam and Jenn Zillins, mother of Frank Zillins.

Picture 1
(Frank Zillins, photo provided by Adam and Jenn Zillins)

My son, Frank Zillins, was born on October 5, 2017 in Ann Arbor Michigan with Dilated Cardiomyopathy. He has been hospitalized at Mott Children’s Hospital since birth. He is now 14 weeks old. He does not qualify for surgery because Cardiomyopathy cannot be cured or ‘fixed’ with surgery since his CHD is caused by an enlarged, weak heart muscle. The only cure is a new heart. Right now, he is on the donor list waiting for a heart, so he can have a transplant. We were told his waiting time for a new heart is 6-8 months based on his body type (height and weight), antibodies and location. Right now he is 8.4 pounds.

Picture 2
(Frank Zillins, photo provided by Adam and Jenn Zillins)

In the beginning, he had a difficult time gaining weight and absorbing feeds in his stomach. But a NICU fellow suggested MCT Oil which has worked and he’s been able to gain weight since! He is also on a specialized pre-digested formula called Alfamino since pregestimil didn’t work. Since he also has problems pooping, they are giving him prune juice and a rectal suppository pill once a day. The ICU Nurses mix the Alfamino with MCT Oil and prune juice and give it to him via feeding tube. He is also on the breathing ventilator because his heart is too weak to pump enough blood to the rest of the body that you may use.

We created an Instagram page for Baby Frank: https://www.instagram.com/baby.frank.zillins/

Thank you Adam and Jenn Zillins for sharing your story about little Frank. He is such a sweetheart, and I hope all the best for Frank and your family.
If you would like to submit a CHD Warrior story, please email me your story at eandowriter@gmail.com
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