At seven years old, Ciaran Hendron likes to think he is the man of the house and eagerly volunteers to help his mum, Pauline, at every opportunity.
When he’s not indulging in DIY, Ciaran loves tearing round the park after reminding his mum to take her medication.
The fact that she cannot chase him round the swings isn’t talked about, for she does her best to shield her only son from the condition which he stands a 50% chance of inheriting.
Now 43, she has been forced to give up her job as an auxillary assistant at Raigmore Hospital and believes the only thing which makes her get out of bed in the morning is the little boy whom she nearly died having.
Having tried for two years to conceive, Pauline and her partner, Allan, who is in the Armed Forces, were delighted when they found out they were expecting a baby.
Pauline made plans for the nursery at the family home in Inverness and excitedly kept Allan informed, as he was based in Shropshire at the time.
Yet when she was only eight weeks pregnant, Pauline knew something wasn’t quite right after experiencing extreme exhaustion and breathlessness.
It took seven long months to receive any kind of diagnosis, and Ciaran was only a day old having been delivered at 31 weeks when the devastating news was confirmed.
The new mum was told she has pulmonary hypertension (PH), a life-limiting illness that causes high blood pressure in the blood vessels connecting the heart and lungs.
Pauline also has a hole in her heart and nearly died during Ciaran’s birth after oxygen levels in her blood fell dangerously low.
Although Pauline takes medication to maintain some quality of life, there is no cure for the rare disease, and had she fallen ill during the 1980s, life expectancy for sufferers was then only two years.
Medication is pumped directly into her heart and she also relies on an oxygen machine, but is determined to make the most of every day she has with her son.
Unable to take him to the park without being accompanied by another adult, motherhood has been so very different from Pauline’s original dream. In Ciaran’s early years, family rallied round while Allan was deployed to Afghanistan.
But for every activity which Pauline cannot enjoy, Ciaran is not just her reason to smile but her motivation to keep living.
Pauline’s story
I cried tears of happiness when I found out I was pregnant but I became ill very quickly.
My patients at work were noticing how tired I was and kept telling me to rest, and I ended up getting signed off work when I was only eight weeks pregnant.
I knew something wasn’t right, but every time I went to the doctor, my symptoms were put down to a difficult pregnancy.
One doctor even told me I had brought it on myself and I just had to get on with things. I even convinced myself that everything was down to pregnancy.
I was breathless all the time and as my pregnancy progressed, my symptoms increased until I looked like a corpse.
I was grey in colour and ended up moving in with my mum as her house doesn’t have stairs.
I went back and forth to the hospital on numerous occasions but they were more focused on checking that the baby was OK.
Finally, when I was seven months pregnant, my symptoms were taken seriously and I ended up getting sent to the Golden Jubilee Hospital in Glasgow.
The weather was too bad to send me by air ambulance so I went by road. I only found out later that paramedics were warned I could die on the way.
There was still no official diagnosis when Ciaran was born via C-section at 31 weeks. He was sent to a neonatal ward in a different hospital.
I almost died during the procedure, and the following day, I received the diagnosis.
There was relief that someone was listening to me but I cried for a whole month. It felt like in exchange for this tiny perfect baby, everything else had been taken away from me.
I had so many dreams… I was going to walk my baby for miles but instead I was given this life sentence.
I’m always on the lookout for symptoms in Ciaran but I’m going to leave it down to him as to whether he gets tested.
My family supports me and even Ciaran reminds me to take my medication.
I shield him from the bad days and in the moments when I feel there is no point to anything, I remind myself that I cannot leave Ciaran without a mummy.
He is my reason to get up in the morning. This disease is not going to beat me.
Symptoms of pulmonary hypertension
- Shortness of breath
- Fatigue
- Dizziness or fainting
- Chest pressure or pain
- Swelling in the ankles, legs, and abdomen