Christian J. ~ Super Hero Alias: Powerful Pnut
Age: 7 years
Weight at Birth: 3 lbs, 2 oz
Weeks Gestation: 32 weeks
Time in the NICU: 40 days
Diagnosis, complications, surgeries?
He has had heart surgery for Tetralogy of Fallot and has had a trach. Also has had multiple surgeries.
Why should your child be recognized as “Preemie of the Year”?
He has overcome so much. Not only has he had a ton of different surgeries, but he has such a rare chromosome deletion that he is the ONLY person in the whole entire world EVER with this particular deletion. Because of this, his doctors can’t predict his future since they know nothing about this. His doctors are writing a paper on him to get published so he will be in medical textbooks. He will eventually get a syndrome named after him. He still has a long road ahead but is doing great. He has developmental delays and dyspraxia. He is a very special and unique child and my living miracle! His doctors said he might never walk or talk, and he does both. He’s extremely intelligent and the most loving child. There were many times that he came very close to death. I know that God has a special plan for his life!
Using three or more typical characteristics of a Super Hero, please describe your child.
He’s extremely strong, resilient, and very brave. With all of the surgeries he’s had and everything he’s been through he is a true super hero in my eyes. I can’t imagine surviving everything he has been through. Children definitely have a tough skin and are very resilient.
What advice do you have for future NICU parents?
Surround yourself with as many people who can help and support you. Emotional support is a must! You are your child’s BEST advocate! Don’t be afraid to ask the doctors questions about your child and get informed about your child’s condition any way that you can.
Describe how Hand to Hold’s services are meaningful to you and future families. What kind of support would have helped you most during your journey?
I really wish I would have known other moms who were going through what I was. I know lots of people now and since my son is 7, I can now help and encourage others!
