Ethan's Story

I'm sure most parents will tell you that things are easier the second time around - and in our case that was what we expected with our second son, Ethan. The pregnancy went great, and since this was our second time around, I didn't need to take time off prior to the birth to just sit there and wait for "it's time". My mother-in-law, who happened to be visiting called me at work and said that I should come home and get Sheri to the hospital. We made it with plenty of time to spare; in fact I even caught about an hour or so worth of sleep prior to Ethan making his arrival early Thursday morning, the 27th of October.

Our pediatrician happened to be at the hospital early that morning doing rounds and checked up on Ethan, who by all accounts so far was extremely healthy. He stated that he looked good, but had a slight murmur that we shouldn't worry about, but he did want to have it checked out by a cardiologist the following day. Thursday went as most days do for parents and new babies - tons of pictures, emails, texts, visitors, mixed with a little rest and immense happiness! Friday morning was greeted with another visit from our pediatrician who then presented us with some concern as he said the murmur was now more pronounced and most likely not a simple hole that would close itself in a couple weeks. Around midday I took Ethan for his echocardiogram and tried to absorb as much information as possible, though the technician - who later became a great fan of Ethan through his bi-monthly cardiology check-ups – stuck with the protocol and said that "the cardiologist would have to review the echo and give us the information". A few hours later we were hit with some of the worst news we’d ever have to hear. Ethan was diagnosed with Tetralogy of Fallot and he would need to have open-heart surgery. Just those words themselves are enough to invoke fear, I wouldn't wish it upon anyone, but to hear that your infant son is going to require it to live is almost unbearable. I wish, as I'm sure most parents associated with Cooper's Cause do, that we had some way to prepare others to hear those words, but I'm just not sure how to do it.

Ethan was diagnosed with a few other complications, minor in comparison at the time to his heart surgery. He had a vocal chord web which inhibits his vocal volume (including crying), but doesn't effect him otherwise. Ethan was also diagnosed with DiGeorge Syndrome, otherwise known as 22Q Deletion syndrome. Ethan went in for heart surgery on June 7, 2011, and came out of it better than anyone could have hoped. The surgeon was ecstatic with the outcome and thought that he should recover extremely well. Though he did have some hurdles during his 16 day stay in the PICU, the entire staff – the surgeons, doctors, nurses, and everyone at Children's Mercy in Kansas City, Missouri were FANTASTIC! Ethan will most likely need another surgery to replace a leaky valve at some point in his life, but as of now is doing great. His vocal chord web was clipped while at Children's Mercy to help with his extabation and he is getting more vocal every day! His DiGeorge symptoms are mild to this point and he's meeting almost all of his developmental milestones.

Though we can't name them all, we want to thank all of the people that have helped us through this struggle. We thank God for presenting us with this challenge, and for giving so many wonderful people the gifts necessary to win this battle, especially Dr. Anitha Parthiban his cardiologist, Dr. Pamela Gandy his surgeon, and all of the doctors, nurses, technicians and assistants that have helped us through this. We want to thank our family and friends, most notably Bruce & Cindy Dick who were incredibly strong and helped us so much with our three-year old son, Logan, so he didn't have to "live" in the hospital with us. We want to thank the entire congregation St. Michael's and All Angels Episcopal Church, and especially Father Bill Breedlove for the prayers and blessings before, during, and after the surgery. We also want to thank Cooper's Cause for the dedication and support that they provide to so many; not only through their grants, but through their programs, efforts, and awareness. Unfortunately these stories will continue to occur for families in the future, but we can all work to find cures, solutions, and comfort together.

Thank You - Kevin, Sheri, Logan, and Ethan Nichols

Ethan
Ethan

Ethan
June 2011

Ethan
Ethan being held by his big brother Logan

Ethan
Kevin, Sheri, Logan, and Ethan