Newborn Screening Family Stories

Christopher's Story (LCHAD) and Stephanie's New Book!

Five years after our marriage, my husband Ryan and I got pregnant and were excited to start our family. I suppose many couples imagine what childbirth and rearing might look like, and we were no different. We spent months going to Bradley Method classes hoping to have a natural childbirth, and spent quite a bit of time reading and talking about the changes that would occur in our lives.

As we waited for the birth of our child there was much excitement, anticipation, hope and expectation about what lie ahead. We imagined that after the birth of our child we would gather in our birthing room, drink sparkling cider with our friends and give a toast to our new child.

Much to our surprise Christopher Ryan Harry was born on August 11, 2008 through emergency c-section. My liver and kidneys had begun to fail, so in an attempt to save my life they delivered my son. Christopher did quite well in the NICU and Ryan often talks about how he was one of the largest babies there (at 18inches long and 5lbs 3ozs). I, on the other hand, was fighting for my life. My kidneys had completely failed, my liver was not working and my body went into DIC. I was put on life support, where I stayed for eight days in a coma. During that time I was given a product called factor seven. It helped my blood to start clotting again, and slowly I began to recover.

The first time I saw Christopher was 10 days after he was born. The amazing NICU staff and my ICU nurses worked hard to make it possible for Christopher to come down and see me the day after I was taken off of life support. Although I do not remember this, the pictures and video that was taken at this time still brings tears to my eyes.

The first day I remember seeing Christopher and his first year of life, are far from what Ryan and I could have ever imagined for our family. Soon after I awoke from life support we were told that we couldn’t have any more children, that I couldn’t breastfeed and that our child had LCHAD. Ryan went on medical leave from his job for three months to help care for Christopher and I. When I left the hospital I was still fighting an infection in my bloodstream and was trying to re-learn to walk. In the midst of all of the challenges of our birth experience and trying to acclimate ourselves to the constant feedings of our child, Ryan and I quickly saw that we had so much to be grateful for. We were so encouraged as family, friends and neighbors offered their time, care and support. Although Christopher couldn’t receive the initial doting we had hoped for, he received plenty as the year moved forward.

Christopher continues to grow and is doing very well. So far he has been able to by-pass hospitalization due to metabolic crisis and we are amazed at how he is thriving. His joy for life is what stands out to me the most. If he finds something funny he doesn’t just laugh and move on to something else, he is on the ground rolling in uncontrollable laughter. He loves music and will sing while doing a tambourine march around our house. It is hard to know how to capture the vibrancy of a child in words, but he shakes your soul at the core and makes you smile.

We are strong believers that he will be his best advocate growing up, so we are trying to teach him as much as we can early on about his condition and food choices. He loves singing the “Fat Song” which teaches him how to spell the word fat so he can recognize it on food labels. We also try to talk about what is “Christopher Friendly” and what is not. His favorite question these days is, “Is that Christopher-Friendly?” I always try to put more emphasis on what he can eat rather than what he can’t because there are so many yummy foods that are good for him!

I think the biggest challenge for me right now is balancing the knowledge of his condition and diet management, with enjoying him and who he is at age 3. Although Christopher has stayed out of the hospital, his blood work has led to several dietary changes over the last three years. Sometimes this has meant adjusting daily consumption of fat, other times this has meant adjusting MCT oil, and still other times this has meant changing his cornstarch intake. I often feel like a “fat-o-meter” and “energy-monitor” trying to make sure that all of his dietary needs are met. All the while Christopher is bopping around me, smiling and enjoying life. I often find myself asking, “Am I enjoying life enough with him? Or do I spend too much time worried or discouraged about the future?” Balance is such a difficult thing to obtain.

Thank goodness that I have Christopher to keep me in line. When I get all too serious or frustrated with his condition, he runs up to me in his fireman hat and jacket and says, “Mommy you on fire?” And off we go, putting fires out and rescuing his favo rite stuffed animals from the flames in his bedroom! And as I sneak a few kisses in from my fireman, I feel so grateful to have such an amazing son and wonderful family.

Stephanie Harry
Christopher LCHAD 3
srharry374@hotmail.com

                                       Stephanie wrote a book!

"If you enjoyed this book please consider sharing it with your metabolic team, as many metabolic facilities are still unaware that this book exists! And we would like all families who have children with LCHAD, VLCAD and TFP to have access to this resource!"

I checked on the process of delivery and turn around with a variety people and it seems that the book typically takes about 1-2 weeks for delivery. So although there was an earlier concern apparently that was a glitch that has not been repeated (good to know!) So I don't think we need to include any information about shipping.

"My Special Body” is a children's book that was written for children with LCHAD, TFP and VLCAD deficiency and was published one year ago. If your child has been diagnosed with these conditions and you have not yet received a copy please visit the FOD website to fill out an order form. Currently, Stephanie (the author) is trying to reach out to the metabolic clinics and make them aware that the book exists! Her desire is that all families with these metabolic conditions can utilize the book and she can sure use your help! If your child visits a metabolic clinic throughout the year, if you would consider sharing with them information about the book or Stephanie's contact information this would be very helpful!

You and/or your clinicians are welcome to contact her at srharry374@hotmail.com
Stephanie Harry blog www.harryfamilyblog.blogspot.com