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CoRDS Registry

Kawasaki Disease Foundation Australia has partnered with Sanford Coordination of Rare Diseases (CoRDS) Registry.

This is an international and Central registry of individuals of any age who have been diagnosed with a rare disease. It was primarily developed to meet an unmet need for patient registries worldwide.

If you or a family member has been diagnosed with KD, you can help researchers see the whole picture.

To enrol in the CoRDS registry, or for more information, visit www.sanfordresearch.org/cords


Locock Family

 

In Loving Memory of Gemma Locock

7-9-07 to 16-3-08

 

Written by Katey Locock (Gemma's Mum)

My husband and I were surprised to find out that we were having twins I was both scared and excited at the same time with my first thoughts being oh my god how am I going to do this? We already had a 15month old daughter Amber. Time went quickly and soon our twin baby girls were born on the 7th of September 2007 and fondly enough on my brothers 19th birthday. Jasmine was first born and then came Gemma 4 minutes later, Jasmine was fine but Gemma had difficulties breathing so she was taking to the NICU at John Hunter Children's hospital Newcastle NSW Australia.

She spent four days in there. We finally got to go home on the fifth day.

Life was great! We have three gorgeous girls all under the age of two. Gemma was constantly sick on and off and spent a lot of time going to and from the doctors.

On the 4th of February 2008 Gemma had diarrhoea for two days and a rash on her stomach that I thought was a heat rash. On the 6th of February she woke up with a severe rash covering her whole body, she had a really high temperature and also vomiting. We spent the day at the ED at JHH. A blood test was done showing she had high platelet count, it was decided Gemma would stay the night as she could not keep anything down. They put a drip in and took another blood test and to my belief were never looked at due to shift change in doctors. We were then taken to a ward and put into a single room, not being told that it was an isolation room until two days later when a friend brought her baby into the room and we were then told by the doctor that kids shouldn’t be in there because they weren’t too sure what Gemma had.

The previous day Jasmine and Amber were there all day and no one said a thing. On the second day a doctor came by and his words were “it was a mystery”. The rash continued, temps got worse and diarrhoea persisted. She had red palms and red soles of her feet, they were swollen and peeling and she also had red eyes and dry cracked lips. These symptoms didn’t seem a concern to the doctor.
Some but not all her symptoms were documented in her medical records.

The only treatment Gemma received in the four days she was there was panadol and fluid through a drip. The panadol would bring down her temperature slowly but as soon as a dose was missed it would sky rocket again. The same doctor treated Gemma the whole time she was in there.

He decided she had a viral infection most probably gastro. Gemma’s temps started to go down a bit and rash wasn’t as severe. On the fourth day we were told she was able to go home, as she was keeping some bottles down. We were given a gate way pass so that if Gemmas temperature went above 38.5 we could go directly to the ward.
Symptoms persisted another few days and gradually disappeared but Gemma was still not herself. We visited the GP two times-- my words were” She’s still not right she needs something”

I was told she was the weaker twin and she would pick up whatever was going and when she got sick it would hit her hard. On the second visit she was given reflux medicine as she was still vomiting. A few days after taking the medicine she started to pick up a bit, well so I thought at the time.

On the 16th of March 2008 we woke up and I tried to give Gemma a bottle but she didn’t keep anything down. I didn’t think too much of it. I put Gemma into her bouncer and walked into the kitchen but when I returned she was gasping for air. I sat down with her and tried to talk to her but she couldn’t focus on me, her eyes were rolling around in her head. I rushed her to the JHH where we were taken to a room in the ED. Gemma was still gasping for air and was very cold. They put her under a heater and connected her to a heart machine; they then put a drip in her head and took some blood. Gemma did not take her eyes off me the whole time. Five minutes later Gemma stopped breathing. People came running from everywhere; they were doing CPR on my baby. I was told to go to some room but stood there for what seemed a life time. I wanted to stay but I knew I couldn’t. I walked out into the hall and a nurse walking by stopped and asked what was going on. I was taken to a room then a counsellor came in. At this point I still thought Gemma was going to be ok, even though they were resuscitating. It wasn’t until they rang my husband and my mum that I realised what was happening. They were told to get to the hospital because I needed them, I couldn’t believe this was happening. She was fine yesterday, I just wanted someone to wake me up and tell me it was a dream. They tried to resuscitate Gemma for 42 minutes.

My family and my husband’s family are still trying to come to terms with what has happened, I relive this everyday and it’s never going to go away. They did an autopsy on Gemma and found that she had died from KD. She had all these symptoms 5 and half weeks earlier and nobody had joined the dots and suspected KD. On Tuesday the 18th of March the funeral director brought Gemma out to the house. Jasmine and Amber had been to the hospital that morning and had blood tests. We received a call that afternoon saying Jasmine had abnormalities in her blood and we needed to take her to the hospital to stay the night. Jasmine received gamma goblin and aspirin as a precaution and two more blood tests were done. We had already lost Gemma two days earlier but were made to wait another day for Jasmine to have an echo on her heart to see whether the heart damage had occurred. Luckily it turned out Jasmine was fine, there was a mistake with the blood lab that caused a false reading. So on top of what happened with Gemma we were led to believe Jasmine had the same thing and it would only be a matter of time before the same thing happened to her. Both Jasmine and Amber are both healthy young girls today.

There was an article in the Sun Herald Sydney Australia on the 20th of April.
We feel very let down that Gemma was not diagnosed –if she was, there is a very good chance my baby would still be with me today. I will not rest until there is a lot more awareness of this terrible disease.