It’s always a little worrying when your kids are ill. Most times, of course, it’s just a cold or a sickness bug or a fever that passes after a few days. Once we know it’s nothing too serious, we offer them comfort and medication, and get on with everyday life as best we can.
So in September last year, when all four of my children came down with a cold, I wasn’t overly concerned. They had the same symptoms, all took the same medicine to deal with it, and carried on with the usual routine. Three of them recovered as expected but my youngest, two-year-old Abigail, got worse.
We visited the pediatrician twice in three weeks and Abigail was prescribed antibiotics. When I woke her up in the early hours one morning for her medication, I realized she was unable to move her arm. It was paralyzed. This wasn’t right – far from it!
We were at the hospital in around half an hour – by 2.30am. They took her straight through to do blood tests and to x-ray her shoulder. An hour later, a doctor came to tell us he was seeking a second opinion – the x-ray looked normal and so did the tests. Over the next few hours we saw three more doctors, who each told us the same thing – there appeared to be nothing wrong. Finally, we were told Abigail had a pinched nerve. She should wear a sling and we should go back to see someone in the orthopedics department a few days later.
After we got home, we gave Abigail a warm bath and put her to bed. By 2pm that afternoon, she had a fever and her right shoulder was pretty much immobile. This wasn’t just a pinched nerve, I was sure of it. I called her pediatrician, who agreed and said we should take her to a different hospital. Within an hour she was on the intensive care unit undergoing a spinal tap, CT scan and more blood tests. She had an IV feeding her steroids and antibiotics. They clearly didn’t think it was a pinched nerve either.
All we could do was wait to see what was wrong, and after two days on the ICU we had an answer. Nobody knew. What? They’d done every test they could do and they had no idea what was wrong with my little girl? How could that be? In reply, we were told there was nothing more they could do – they were sending Abigail to the specialist children’s hospital in Atlanta, Georgia.
Watching my baby girl being carried away in an ambulance was one of the most difficult things I have ever had to do. We followed in the car feeling helpless and scared. The fear of the unknown is unbelievably terrifying, and we had no idea what was coming next. I prayed harder than I ever have in my life, begging God to spare my little girl and take me instead, if that’s what it would take.
On arrival we were directed to go to admissions to fill out the paperwork. I couldn’t help wondering why we had to do this now – I just wanted to know how my little girl was doing. I couldn’t focus on what I was reading – I rushed through it all so I could get to Abigail. My baby girl was surrounded by nurses and hooked up to machines. Every time a doctor came in, I bombarded them with questions. All I wanted was some answers! The next day, the neurologist came to see us and said that, unfortunately, Abigail would have to get worse before she got better. That was the only way they’d be able to learn exactly what we were dealing with.
It was the waiting game, again. And eventually we learned that Abigail had acute flaccid myelitis – a rare but serious condition affecting the nervous system. The diagnosis finally came after her left lung collapsed, she became totally paralyzed, and had more tubes in her than I ever thought possible. She spent three weeks on ICU. There were respiratory treatments every two hours. Feeding tubes, two IVs, occupational therapy, physical therapy, speech therapy. She got plasma treatments every other day, and after the second one we noticed some reflex movement was returning. Slowly, as the days went by, her condition improved.
Once there is improvement, hope follows soon after. We celebrated when we were told Abigail was stable enough to be transferred to inpatient rehab. Regaining movement in both legs and her right arm, being able to eat and drink again – these were further causes of joy. And, most importantly, she was able to breathe on her own once more. As she went through her treatment, we fought each day as though it were our last with her. The weeks passed. Abigail learned to sit up, stand and walk again, with some help of course. She was our little girl once more.
It took two months before we were able to take her home. She was so happy and excited – we hadn’t seen her that way for so long. I couldn’t help but reflect on how lucky we were – we could have been returning with no child at all. We stopped at McDonald’s for a Happy Meal, and Abigail kept repeating, “Home, home, home.” When she finally realized that was in fact where we were headed, she was happier than ever. She was thrilled to see her family and had the biggest smile on her face as they surrounded her.
That wasn’t the end of it, of course. Abigail still needed some treatments and therapy – starting the very next day. To begin with she cried and fought, and the medical staff didn’t think she was progressing. Then, when she took her first steps on her own, we all knew it would be okay.
Since then, Abigail has done so well and regained movement in her whole body apart from her left arm. That does mean she’ll have to have three nerve transfer surgeries over the next year, as well as intensive rehabilitation to build up her strength and get the new nerves working. We’ll deal with that as it comes and follow her example – she’s so determined and has such high spirits. She just keeps moving on, no matter what.
We’re also doing our best to raise awareness about AFM. We want to offer help and hope to those who need it. We’re demanding answers from the CDC (Centers for Disease Control & Prevention) because even now, months later, we don’t know how or why Abigail got it. Not having any answers is the worst thing. Not the experience, having to see her with all those tubes in her or watching her go through so many treatments and therapies. But knowing that despite all those tests, all that medical expertise, nobody can tell us what caused her illness.
Was it something I did, something I gave her for her cold? Did she get bitten by a bug or something – could that do it? Or was it something that hundreds – thousands – of kids do every day and she was just unlucky? Will it affect her and her health in future? So many unknowns. Maybe one day there’ll be answers. For now, we’re just grateful Abigail has recovered so well and is doing okay.