by Leanne Weymark-Cotter
Around midnight Saturday 29th October 1994…
Danielle, my 14 month old baby girl, woke up sick, vomiting with a high temperature in the middle of the night. I gave her some Panadol but she couldn’t keep that down. I put a cool face washer on her forehead, took her blankets off and kept an eye on her during the rest of the night. She had been sick with a throat infection two weeks earlier and I thought it was that again. I was wrong.
In the morning she slept until about 8 o’clock which was late for her so I went in to check. She was even hotter. I lifted her up out of her cot and she couldn’t lift her head up, couldn’t lift her arms up to me. She was limp. I had a horrible feeling this was more than just a throat infection. I put her and my then 3 year old son Dale in the car and drove up to the Doctors.
The Doctor took her blood pressure and it was not good. An ambulance was called, but Nowra, where the nearest hospital was, was 35 minutes away. As she was being put in the ambulance the Doctor gave her an injection of penicillin which was one of the reasons she made it to the hospital.
I was holding her in the ambulance on the way there and I noticed that we were driving very slowly along bumpy, dirt roads which is not needed to get into town. I had no idea where we were and I was sure we should have been there by now. I couldn’t work out why we weren’t travelling the most direct route. That soon became very clear to me.
We stopped on the side of the road half way there. I had no idea what was going on. Then the back door opened and a paramedic jumped in. She was so sick we had to meet the paramedics on the way. My baby probably wouldn’t have lived if we had gone straight to the hospital. I have no idea where he came from, it was just like he appeared out of nowhere. We kept driving and left the car that he came in on the side of the road. There were now two ambulance/paramedics working on Danielle to try and get her to the hospital alive.
She made it, just. On arrival she had no blood pressure, had stopped breathing and had to be resuscitated. I was taken into a room away from the usual emergency area. And away from my baby. I can’t remember a lot of what happened at Shoalhaven Hospital except that she had very light purple blotches on her torso, front and back that kept coming and going. And her left arm was starting to go grey. I’ve since read her admission notes and apparently she improved enough for me to hold her, though unfortunately I don’t remember. Then, shortly after, she started to decline rapidly. All of her veins began to shut down.
The Doctors told me she would have to be transported by helicopter to Camperdown Children’s Hospital in Sydney. I didn’t know why they couldn’t help her at Nowra, no-one had told me what was wrong with her, maybe they didn’t know. But I was glad she was going to Sydney because I knew she would be in the best hands.
I had to organise someone to look after Dale and I also had to go back home to pack some clothes. I couldn’t go in the helicopter with her because there wasn’t enough room (and maybe they just didn’t want me there) which is fair enough looking back now but it didn’t seem it at the time. The usual helicopter was being used for another rescue so Danielle was air lifted in a smaller one.
It took hours to stabilise her for the flight. I watched her being put into the little red helicopter and my heart just sank. I felt like it was going to be the last time I saw her alive. She was being taken away from me. It was now Saturday afternoon.
The drive to Sydney took forever, well it seemed like it did. When I got to Camperdown I went to emergency, they told me she was in the intensive care unit. It was like a maze in that hospital, trying to find your way around at night and being in a panic.
I found the ICU and walked in. My baby was lying on a bed on the other side of the room and her arms and legs were black. She had so many tubes and infusions running to her. I don’t remember much after that but at some stage one of the Doctors took me outside and sat me down. He told me that they think Danielle’s got meningococcal and that she probably wasn’t going to live. I hadn’t heard of meningococcal, I had no idea what he was talking about. He tried to explain it to me but it didn’t really matter at the time. The only thing that mattered was that my beautiful baby girl was only with me for 14 months and she was going to be taken away from me for ever.
There were so many operations and tests and Doctors that saw her in the seven weeks that Danielle was in the intensive care unit and then another few weeks in the infectious disease ward, as she had contracted golden staf. Being 1994 there hadn’t been nearly as many cases of meningococcal as there are now. So she was sort of like a guinea pig in a way. A week or two after she was admitted I was told that if she did survive she would probably lose every limb. Her arms and legs were so badly affected. There was talk of her being taken to a hospital with a decompression chamber and putting her in there to try and get the oxygen and blood flow back into her limbs. But that idea was soon aborted, the Doctors didn’t think she’d make the trip even though it was only down the road. She had a cream spread over her arms and legs to try and do the same thing, then wrapped in glad wrap. I’m not sure if it helped. Maybe it did. Doctors from Melbourne and America were giving their opinions on what should be done to help her.
Eleven days after being admitted she had her left arm amputated through her elbow. That was the first of nearly forty operations to date. After that she had her four fingers, palm and half of her thumb off her right hand amputated. It just went on and on. She had her toes amputated, and skin grafts on her arms and legs. Every time she went into theatre we didn’t know what she’d come back with or if she’d come back at all. She had central lines changed and skin grafts done again because they didn’t take the first time. Danielle had some seizures, and she had some swelling around her brain. She was on adult doses of sedatives and pain medication. Her Doctors weren’t really sure why she needed so many drugs, whether it was because she was in so much pain or that her drug tolerance was so high. She was still awake half the time though. When I’d walk in the door she would be straining to sit up to me. Her face would go red and she’d try and lift her arms up to me. And she’d try and talk even while ventilated. That was very sad. I wanted to help her so much but couldn’t. I got to hold her on day 20. I held her for a long time but was so worried that I’d hurt her in some way. She was in plaster and bandages from her neck to her toes.
I took Dale in to see her after five weeks. He kept asking where she was so I thought I’d let him see where she was and it may help him him understand why I couldn’t be with him. She was so happy to see him. She was all smiles, putting her arms up to cuddle him and saying ‘brother’ and giving him kisses.
Danielle was never actually diagnosed with meningococcal septicaemia. The way it was explained to me was that, when she was given the injection of penicillin, getting into the ambulance at the Doctors surgery, that killed off the initial bug. But the toxins had already got so far into her system to make her so sick. So when blood was taken to diagnose nothing showed up. But it was always thought to be meningococcal septicaemia, probably B strain. She would have had a lumbar puncture but the Doctors didn’t think she’d be able to cope with that either. Everyone that had been in contact with her in the last week had to have the antibiotics, in case we were a carrier or had caught it off her.
Her long stay in intensive care soon came to an end. There were very good times and there were very bad times. The best time of course was when she left the ICU, but it was also sad in a way because these people had helped keep my baby alive and done the best they could for her. If it wasn’t for them she wouldn’t be here today. I knew she’d be able to come home soon and her and her big brother would be able to play together again.
Two and a half months after being admitted to Camperdown Children’s Hospital, Danielle was able to go home. Although she was back a week later and then again in another couple of weeks.
After eight years she’s had a lot of surgery. She had a marathon 14 hour operation to take her big toe (one that survived) off her foot and transferred onto her hand in 1999. She can now hold things with a bit more ease. She’s now in the process of having surgery on the bones in her legs to lengthen and straighten them. All the bones in her legs have stopped growing because the growth plates have closed from the damage of meningococcal, so she’ll never be very tall. When that all comes to an end she’ll probably have plastic surgery on her arms and legs. By that stage she’ll be old enough to make those decisions herself.
The way I see it is that she’ll always be my beautiful girl and she’s with us and that’s all that matters.
Updated October 2007
It seems hard to believe that it has been 13 years nearly to the day that Danielle contracted meningococcal septicaemia. So much has happened in those years. She has grown from my little baby girl into a young adult who has dreams and visions of her life ahead. She is a horse mad, animal lover, amazing swimmer, caring for the environment, fun loving, strong willed, independent, knows what she wants (and is not afraid to say it), loving daughter, stepdaughter and sister.
She’s had three leg lengthening procedures in the space of three years where her doctors cut the bones in her legs, put rods and wires through then built a frame on the outside. The whole process from start to finish takes up to eight months. In that time she has lots of physiotherapy, and hydrotherapy and extra trips to the hospital. At one stage we were travelling to the hospital 4-5 days a week. It was hard going but we always get there in the end.
We have just recently found out that the joints in her finger (her toe that was transferred to her hand in 1999) are collapsing. We do envisage more surgery in the years to come but as always I’m sure she’ll keep her chin up.
She still loves her horse riding and rides every weekend. She would ride every day if she could.
Just this past week she competed in her first swimming race at Homebush and she broke an Australia record! She’s only just started training three days a week and she was just looking forward to swimming at her first meet, never expecting to set a new Australia record!
I’ve got to say as her mum I’m not all that surprised that she broke a record so soon. I can see more records will be broken in the future if that’s what she wants to do, she will do it.
Danielle’s Website can be found at www.danielleweymark.com.au.