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MCADD = Medium Chain Acyl-CoA Dehydrogenase Deficiency




Samara Grace Dennis


Samara's MCADD Story

On the evening of November 18, 2004, I had just given my 13 month old daughter, Samara, her bottle for the night and was giving her a cuddle before I put her to bed when she vomited all over the both of us. I didn't panic as this has happened before and the doctor thought it was just symptoms of teething. During the night she vomited again so I took her in to bed with me to keep an eye on her.

The next day she had stopped vomiting but now she had diarrhea. I went to the chemist and got her some Hydralyte popsicles for gastroenteritis. She refused to take them so I took to syringing them to her but she fought me every time I tried to get her to have some and I eventually gave up.

We had been shopping during the day and she had fallen asleep on the 2 minute drive home which I thought was very unusual as she never does this. Again, I didn't worry too much as I thought she was just tired from not getting a good night's sleep the night before until she vomited once more at about 6pm. It was then I decided it was time she went to the hospital to be checked out.

We arrived at emergency and she was thoroughly checked by a nurse who said that she was slightly dehydrated but otherwise fine. She also said we could wait for our GP if we liked and get him to check her over but she was playing and being her usual cheeky self so I decided to take her home. From there I put her straight to bed.

At 4am Samara woke up crying. I went in and found her extremely cold so
I put her in her sleeping bag and put her straight down to sleep again.

The next morning I thought I heard her talking to herself but when I went in to check on her I found her snoring and still asleep (or so I thought). I never tried to wake her as we both needed the sleep.

About 9am on Saturday morning I heard her vomiting in her sleep and I ran into her room and picked her up and held her over the basin in the bathroom. Then she went all floppy in my arms so
I grabbed my things and raced up to the hospital.

We arrived at Albany Regional Hospital where the nurse from the night before saw us and hooked Samara up to monitors. She checked her blood sugar levels and noticed they were dangerously low. Samara was given fluids through a bone in her leg as they couldn't find her veins.

X-rays were then done on her lungs to see if she had inhaled any mucus which came back clear and a CT Scan was done on her brain but again nothing was found. It was then they decided she needed to be flown to Princess Margaret Hospital for Children in Perth, Western Australia for more extensive tests to be done.

Six hours after we arrived at the hospital in Albany, we were eventually flown up to Perth by the Royal Flying Doctors Service where I then came down with the gastro bug myself after arriving at the emergency ward of PMH. My baby girl needed me and I couldn't help her as I was so sick. Her dad then arrived so he took over from me, which was a blessing.

Finally she was wheeled up to ICU where she eventually woke up at 1pm on Sunday 21 November. What a relief!!! Although, she was still very flat and we still had no answers from the doctors. Monday night we were told what was the cause of this horrible nightmare.

Samara has MCAD.

For the next three days we helped her try to regain her strength by feeding her every two hours with milk and glucolect. The doctors and nurses were an absolute godsend and were amazing with Samara and the entire family by her side.

The entire journey those few days were made much more bearable by the wonderful staff at both Albany & Princess Margaret Hospitals, the St. John's Ambulance drivers and the Royal Flying Doctors service.

Of course now the real work starts with making sure she eats regularly during the day and overnight and seeking medical attention when she is sick. The overnight feed is taking Samara a little bit to adjust to as she has been sleeping for 12 hours a night since she was 5 months old.

At least we know now what caused this near tragedy and we can try to make sure it never happens again. I thank God that we still have our precious little girl with us today.

Please, I urge anyone reading this, please get your child screened immediately. It could save their life and your family a lot of heartbreak.

Tracy Richardson
(Mother of Samara Grace Dennis born October 13, 2003)
Albany, Western Australia


Samara is getting the word out about MCAD!

 


 

 

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