Ruby was born at 30 weeks gestation via emergency caesarean and was a tiny 1044 grams at birth. She suffered from tachycardias (when the heart beats over 100 bpm) and was given caffeine to help prevent bradycardias (when the heart beats under 60 bpm). Ruby was required to be on a continuous positive air pressure (CPAP) machine to keep her airways open. She had jaundice, requiring phototherapy several times and suffered from continual apnoea episodes throughout her stay in the neonatal intensive care unit. Due to being intubated, Ruby developed an oral aversion so in turn she came home with a nasal gastric tube. Her hospital stay was 10 weeks in total.
So why did all of this have to happen to Ruby?
The answer is because I developed a life threatening and rare complication called HELLP syndrome. My kidneys and liver were failing. I was at risk of seizures and there was a chance that I may lose my life.
Ruby was at risk of losing hers before it had even began.
HELLP stands for H (hemolysis, which is the breaking down of red blood cells), EL (elevated liver enzymes) and LP (low platelet count). The most reported symptoms of HELLP syndrome are the following;
- Headache
- Nausea and/or vomiting
- Visual disturbances
- Swelling
- High blood pressure
- Epigastric tenderness and upper right quadrant pain (from liver distention)
- Protein in the urine
Ruby is now 16 months old. She continues to have issues with her feeding, causing her weight gain to be slow. Ruby also has experienced hypersensitivity, which has caused her some distress in social situations.
The experts said that Ruby would grow to be a strong person, and she has proven that.
They said she may have issues with her sight and hearing… Apart from the earlier hearing tests, Ruby has blitzed every test since.
They said she might struggle with feeding… And that she has. However, Ruby surprised us recently and moved onto ‘soft lumps’ from her normally pureed foods.
They said we may come across issues with Ruby’s brain development due to her prematurity… And so far we have seen none. Ruby is one clever little girl. She is clapping, ‘high fiving’ everyone and playing peek-a-boo just like all of the other 16 month olds.
They said that Ruby would be smaller than most other kids her age… She is smaller yet just as capable.
They said she would be 18 months old before she took her first step … And now Ruby is walking, months ahead of when she was expected to take that first step.
They also said that Ruby would rise up and beat her obstacles like many of her premature peers… And that she continues to do each and every day.
It is so easy to forget how precious it is to be alive.
Help us raise awareness of HELLP syndrome. Visit www.facebook.com/littlemiraclebook. There you will find details about a 100% non-profit book I wrote for children that began life in a neonatal intensive care unit (NICU). ‘Little Miracle’ is a heartwarming children’s book that journeys through the ups and downs of a NICU experience. It is a tale of how nothing, not even separation, can break the bond between a mother and her precious child.
All proceeds are going to charities that share my vision of HELLP syndrome awareness.
- What is HELLP Syndrome? - June 24, 2013
