This is a letter emailed to me that I felt compelled to share. (Written 3-17-01)

Sofia's Story


I have visited your MISC homepage a couple times over the past year, and have read the stories of all the children I could find links to. I would like to add the story of my daughter, Sofia, though ours does not have a happy ending. What I do offer is a warning to parents who are considering starting a child on ACTH.

Sofia was born March 2, 2000. The labor was quite rapid, 40 min. from the time we got to the hospital to deliver our second child. She had some problems breathing in the first few hours after birth. The Doctors attributed it to the Nubain my wife, Linnae, had been given about 30 minutes before Sofia’s birth. After a few tense nights in the ICU, Sofia was released to our care at home. Except for a brief period of apnea at about 2 weeks, Sofia developed normally until the seizures started.

The first Seizure came on May 2, 2000. My wife and I started Sofia on phenobarbitol within a week. She was seizure-free soon thereafter. We became alarmed at Sofia’s curtailed development and made the switch to Tegretol in July. Sofia was again able to smile briefly after the switch, but the seizures increased in frequency. Later that summer, IS was diagnosed. This was the time that I first visited your homepage.

I think that I always had a “brighter” outlook on Sofia’s long-term development than did my wife, due in no small part to your website, after we learned of the diagnosis. My wife read the textbooks and medical journals that only present the statistics, without the stories of hope. I was confident that ACTH was the best possible drug for Sofia’s situation. The first couple shots were administered at the pediatrician’s office, but I was soon coaxing them into my precious girl’s thigh. Twice every day for seven weeks. I dreaded every one of them.

Sofia’s story takes it’s final, cruel turn in mid-December, 2000. She had suffered from a cold for a couple days, when on December 23, Sofia awoke briefly to nurse, but then slept for the next five hours, a feat of somnolence she had not displayed since the Phenobarb. Days. Our angel baby finally stirred around noon, and ate pretty well as I remember (2 jars of baby food). That night, while at my Father-in-law's birthday party, Sofia seemed very listless, and sleepy, and vomited around 6:30. We left earlier than we might normally have and on the way home, Linnae suggested we take her by the hospital. As much as I try to hide from it, I cannot deny the fact that I talked her out of it. This will haunt me to my grave. But I truly believed that the last thing Sofia needed was to have more blood taken, and that she was just catching up on lost sleep from her cold.

When Linnae finally rousted me from bed at 5:30 the next morning, Sofia was having some difficulty breathing and seemed a little pale. I took her to the ER and was shortly in to see the admitting nurse. Within a minute, Sofia was taken from my arms, the last time I was to hold her while she still drew breath on this Earth. She was shortly intubated, and I called Linnae and told her she should come join me at the hospital (our son Logan stayed with a gracious neighbor). I think I can speak for both of us when I say that that Christmas Eve was the worst day of our life to this point.

Sofia spent the last 12 hours of her life putting every ounce of her energy into fighting off the bacterial infection that was ravaging her body. Her heart stopped twice and was gradually being drained of life. Around nine that night, surrounded by all her family, we unplugged all the tubes and machines and allowed Sofia to draw her last breath in her mother’s arms. She was 3 hours short of her first Christmas.

It would provide me with some solace now if I could know that maybe someone else could learn from our mistakes. I would caution anyone considering ACTH to carefully examine the side affects. Numerous friends and family members of Sofia’s feel guilty that they did not warn us of the dangers they knew steroid drugs could bring. Know that ACTH compromises the immune system and may mask symptoms of some diseases. Call your doctor at the first sign of any illness, avoid anyone you know to be sick, ask plenty of questions, and watch your baby. Get your child on some sort of routine monitoring program (office visits, blood sample, etc.). If your doctor doesn’t suggest this, question him about it. Our doctors never did any blood tests until it was too late.

I don’t know if you are able to add Sofia’s story to your website, but if not please let me know how to do it. Let our angel Sofia save the life of another child.

Andrew Willbanks

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