I’ve seen you in those hospital rooms. I’ve seen you hand your child off to surgeons, not knowing if you would ever get to hold them again with a beating heart. I’ve seen you pray, hope, and hold on to faith with a sheer will that would put most to shame. I’ve seen you hold your baby with tears streaming down your face because this kind of sickness isn’t the kind that just comes and goes, this is the kind where no one can assure you that your child is going to be okay.
You fight for your children when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child. You take part in care for your child in ways even some in the medical field are intimidated by – dropping NG tubes, changing trachs, giving IV meds through a Broviac at home.
You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist. Continue reading →
On Mother’s Day 2010, my son Gavin had his first seizure. That was just before his fourth birthday. Up until that point, Gavin was a healthy young boy. At the hospital that Mother’s Day, Gavin was diagnosed with epilepsy and a brain tumor. For the next three years, Gavin suffered from multiple seizures even though he was on five medications and a special diet. He had seizures most every night and sometimes during the day. We couldn’t leave him alone and had to limit our activities because we never knew when he’d have a seizure.
My husband, Mike, and I were so looking forward to our baby’s 19-week ultrasound so we could find out the gender. That moment didn’t actually turn out as we had envisioned. In addition to finding out that we were having a precious baby boy, we also learned that he had spina bifida, meaning that part of his spinal cord was exposed outside of his body. This came as quite a shock. While I had only heard of spina bifida, my husband is a chiropractor and, with his educational background, knew all about it. For me, however, ignorance was bliss that day.
After the ultrasound and finding out about his diagnosis, we spent the day meeting with various experts from the Fetal Diagnosis & Treatment Center at C.S. Mott Children’s Hospital and Von Voigtlander Women’s Hospital, including a genetic counselor and several members of the Maternal-Fetal Medicine team. We learned about spina bifida and the treatment options available. They told us about a relatively new surgical procedure that could treat our son before he was born. Although not a complete cure, the surgeons would repair the spinal canal and cover it with skin to prevent further trauma. Research demonstrates better outcomes with this approach compared to standard surgery after birth. While there were risks for both me and my unborn son, which the team carefully explained to us – we did not hesitate to say yes in light of the potential to improve his outcome.
From the day my daughter Piper was born, she had problems pooping. She also had a hard time gaining weight and was diagnosed with reflux. She was given supplemental nutrition and treated for the reflux, but she remained chronically constipated. When she did have a bowel movement, it was huge (like softball sized), it would hurt her terribly and she would bleed.
Elizabeth is 15 years old. She spends 1 week out of every month at C.S. Mott Children’s Hospital receiving IVIG treatments for autoimmune encephalitis. But Elizabeth makes the most out of her time at Mott. Alongside our music therapy team, Elizabeth has learned to play the ukelele and piano.
Elizabeth is one of the many reasons we come to work every day.
Everyone from our doctors and nurses to our scientists and social workers are committed to extraordinary care.
From all of us at C.S. Mott Children’s Hospital,
may you have a healthy and joyful 2015.
You can count on us to care for your family, today, tomorrow and always.
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