Posted: July 9, 2018

Sam’s Story

Our bright little boy Sam was born 16 weeks early weighing 1lb 3oz.

When I was 23 weeks and 6 days into the pregnancy my waters ruptured with no warning. We rushed straight to the RVI where we were warned that if the baby came now he would most likely not make it. Sam only managed to hang on a few more hours and was born in the early hours of October 18th 2005.

After being stabilised he got to meet his dad quickly before being rushed to Ward 35, Special Care baby Unit. This was to be his home for the next 7 months. It seemed that almost every other day presented a new problem for Sam. At 10 days old a Blessing was organised, this was a way of welcoming Sam into the family and of us all saying goodbye. He was very poorly.

Sam had suffered a grade 4 IVH, he was suffering from seven different infections, he was in renal failure (his kidneys weren’t working) and there were problems getting his blood pressure under control. His veins would break every time the doctors tried to get a line in to give him medicine. Then there were no more veins to try.

We asked if we could take him home to die.

The next day we came to the ward expecting it to be Sam’s last. We were greeted with the news that Sam was a little better! Sam somehow managed to hang on for 3 days until his veins had recovered enough for the doctors to get a line back in and give him the medicine he needed.  He had won his first major battle but there were many to come.  Sam had an operation at the Freeman to close a duct in his heart. A few days later we became a proper family when his dad and I were married.  But then a few days later it was discovered Sam had a defect in with one of the valves in his heart.

By Christmas things were going well, Sam was weaned from CPAP onto low flow and it looked as if he was all set to move round to the Blue Area.  Then out of the blue he starts to struggle and had to go back on the ventilator.  He went back onto CPAP and started to have time off again at the beginning of January. He was then diagnosed with stage 3 Retinopathy of Prematurity (ROP), which meant he had to go for laser eye surgery to prevent him going blind.

In theatre they tried to intubate Sam and discovered that his airway was completely swollen shut, it was a miracle he was even breathing.  Being intubated had caused scarring and swelling to occur (subglottic stenosis). They were left with no option other than to perform a tracheostomy.

In February the cardiologist found that Sam’s aortic valve was not growing with him and he now has moderate aortic stenosis.

In March, a broncoscopy showed that Sam has floppy airways so would be dependant on CPAP till he grew out of it, all going well we were told 2 years.  The hope was to wean him onto oxygen during the day so he will only need the CPAP at night.

Sam has suffered from intermittent bouts of tummy distension since he was quite small. His tummy was so big it was impacting on his breathing.  So in April he had a laporoscopy to see if a cause could be found and hopefully remedied. They could find nothing but air so performed an ileostomy to help relieve the pressure. They also repaired his hernia and gave him an appendicectomy into the bargain!!

In May, Sam finally started to realise he wanted more than the four walls he was stuck in. He started to tolerate longer times off CPAP till eventually he started to tolerate being off throughout the day.  He started on demand feeds and finally got rid of the NG tube!! After 7 months he finally moved out of Special Care and onto a children’s ward.

He had has his own room complete with TV and even a telephone!! He still needed the CPAP at night and still got a swollen tummy. He started to get to go out and about for short spells and even made it to Grandma’s for Sunday lunch.

Eventually, after 9 long months, Sam was strong enough to come home.  Just days before coming home he finally managed to be weaned off CPAP completely and onto just oxygen.

Once home Sam really started to thrive. After 18 months he grew out of the need for oxygen. He no longer has a tracheostomy nor an ileostomy.  He is a happy, cheeky two year old. His development has been slightly delayed by his early arrival and all the medical problems but given time he will catch up with the other children his age. He is a very bright little boy.

His Dad and I would like to express our heart felt gratitude to the staff of Ward 35. Without their care and dedication Sam would not be here. We owe them everything.

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