So I thought my first post for 2011 would be telling you all about Birdy’s four-year-old birthday. It’s a big deal, turning four. For us, it meant the start of pre-school and that last year at home before school starts and everything changes. I launched into the year looking forward to all the new experiences and skills that a pre-schooler develops: bringing home artwork from pre-school, playing board games and card games for the first time, making friends independently.
But the year started off in its own way. And it wasn’t what I was expecting.
In the days and weeks leading up to Birdy’s birthday, my husband and I had the clear sense that Birdy wasn’t quite right. Sometimes it was more obvious than others. She’d wake up in a bad mood and refuse to eat anything for breakfast. She was more lethargic than usual. She’d fall asleep at odd times and put herself back to bed in the day. Sometimes she said her tummy felt sick, once or twice she pointed to her head. But then at other times she’d join in with other kids and seemed fine. We took her to the GP with this vague assortment of symptoms. The doctor thought she might have a urinary tract infection, but the tests came back clear. I thought perhaps she was gluten intolerant and took her off wheat for a few days. Then on the weekend of her birthday party, she told us she could see two Grannys. She also completely refused to watch any television and started covering up one eye when she wanted to see something. Then we noticed that one of her eyes had started to turn in.
Fortunately, my husband knew that double vision is sometimes serious and took her straight back to the GP. After seeking a second opinion, the GP referred us to an opthomologist with an appointment booked for the next morning at 7.30 AM. My experience with all things medical tells me that if you get an appointment with a specialist the next day, especially a three-hour appointment, you know you should be getting worried. Our GP said that it could just be a lazy eye that had deteriorated due to a virus, but they also had to check for more serious things, to make sure there wasn’t any pressure being exerted on the eyes from behind.
The next day I went to work while my husband took Birdy to the opthomologist. I was on-air doing my radio show at the time, waiting for the call to hear that everything was OK. But the call didn’t come. I knew if it was good news, my husband would ring me to let me know so that I wouldn’t worry. I also knew that if it was bad news, he wouldn’t call me until after I had finished my radio show. By the time it was 11 o’clock, and he still hadn’t called me, I knew something was wrong. I couldn’t wait any longer. I had to know.
I called hubby on his mobile. He told me that the opthomologist had seen a lot of pressure behind the eyes. Something was pressing onto both the eyes from the brain, but the opthomologist hadn’t said any more about what it could be. He had just referred us to the neurologists at Westmead Children’s Hospital. Chris and I both knew it was the ‘T’ word that nobody was going to say. I broke down in tears. I walked out on my show. I couldn’t keep it together.
As I drove to the hospital in shock I was shouting at God in rage. ”You can’t take my baby! Not this one. You’ve taken all the others! I’m keeping this one. You can’t have her! You can’t take her! She’s mine!” This may sound crazy, but after five miscarriages, I’ve developed a little bit of a fear about losing Birdy as well. My husband later told me that he was in the car with Birdy, crying quietly so she wouldn’t hear, saying almost the same words. Although he wasn’t shouting at God. He was more begging in desperation. (That tells you something about our rhino/hedgehog approach to conflict.)
When we finally saw the neurology registrar, he looked in Birdy’s eyes numerous times, examined her skin, asked a gazillion questions, made her walk on a line and did all manner of acrobatics with her. After a time, we saw the neurologist proper and he repeated the whole process. The neurologist explained that Birdy had Papilloedema – swelling of the optic disc that is caused by raised intracranial pressue. He said that there are three things that usually cause raised intracranial pressure. The first can be a blood clot or blockage in the brain, the second is a brain tumor and the third is an infection of the brain, such as encephalitis or menangitis. I was waiting to hear the good option. He said very occasionally they don’t find any cause, but just treat the pressure by doing a lumbar puncture to drain off spinal fluid, which helps to reduce the pressure. He didn’t think she had a severe brain infection because she seemed too well. He thought it was most likely to be a brain tumor or a blood clot. At this point, I was hoping for the blood clot. At least it could be treated with drugs, not surgery.
Unfortunately, they couldn’t get Birdy in for an MRI that day. So we were admitted to the neurology ward for observation and they said they would definately do both the MRI and a lumbar puncture the next day. The lumbar puncture was both to measure the pressure in her head and also an opportunity to drain off some spinal fluid if needed.
So we found ourselves on the neuro ward, surrounded by children with brain tumors and head injuries. Suddenly we had crossed over to the other side. On all our previous visits to the Children’s Hospital, we had known we were the lucky ones. Even though any operation, any injury, any asthma attack is scary, previously our visits had always been brief. We knew we’d be going home the next day. We’d walk out of the hospital grateful that our child didn’t have cancer or a major disability. This time we knew there was very little chance we’d be one of the lucky ones going home the next day. Suddenly the road ahead seemed very uncertain.
Those 32 hours waiting for the MRI were some of the most stressful of my life. (Though actually not the most stressful, which tells you something about my life recently.) Talking to other parents who were going through similar struggles was a godsend. But it was also daunting. One mother I met had a son with a cancerous brain tumor that just wouldn’t go away. They’d found it when he was three and a half. He’d had two operations and chemotherapy but it just kept coming back. He was now 8. That means she has lived for four years with the dread and uncertainty that we’d been experiencing for just 32 hours. I didn’t know how I would cope if that was what we were dealing with.
Finally the time for the MRI arrived. Birdy conveniently fell asleep before they collected her for theatre. Unfortunately she woke up just before they were about to put her under. So she woke to find herself surrounded by doctors in masks and gowns and she was a little freaked out. We went for a walk outside while they did the MRI and the lumbar puncture. My heart was so heavy as we waited to hear whether we were dealing with a blood clot or a tumor. I rang my church and asked them to send out an email to ask people to pray for a good result. That email was forwarded into the inboxes of a most amazing range of people who prayed for us all.
When they finally took Birdy round to recovery, there was no doctor to tell us the results of her MRI. But the aneathatist saw our worried faces and took pity on us. ”The scans were all clear,” he said. ”No sign of a tumour”. You can only imagine how overjoyed we were to hear this news. A few hours later, in the early evening, we got a more complete report from the neuorlogist confirming that she didn’t have a brain tumor, or any obvious clot. The spinal fluid looked heathy and there was no sign of infection. Her intracranial pressure was, however, 52 which was extremely high. On the MRI it looked as though one of her veins might be narrowed. They would start her on medication straight away to save her eyesight.
Hang on. What did you say?
The neurologist explained that the key concern now was to save her eyesight as the main risk was that she might lose vision.
Suddenly a massive weight lifted off my shoulders as I realised that the doctors were now fighting to save her eyesight, not her life. Even if Birdy was blind, she was still my Birdy. I wasn’t going to lose her. Hallelujah! Relief and thankfulness flooded over me.
The fact that Birdy didn’t have a tumor, a clot or a brain infection felt like a major miracle. Even the neurologist seemed surprised. Over the days and weeks that followed, there were more tests, consultations and even another lumbar puncture, but things were definitely on the improve. While we still don’t know what caused Birdy’s intracranial pressure to skyrocket, so far it looks as though her medication is working.
So here we are, still at the start of 2011. I feel like we almost lost our girl and then got her back again. In the process, we lost a three-year-old and gained a four-year-old. And though I have so much more to write, I’m really tired. For a few weeks, life became just rushing from work to hospital and back again. Somewhere in there Birdy had her first day of pre-school, then missed her second because she was back in hospital again.
How is it that for so much of our lives, we don’t realise how fragile we really are? And how much our hearts and souls are wrapped up in the lives of these little people that we love more dearly than we love ourselves?