Twins

Pyloric Stenosis in a baby

Pyloric stenosis in babies

Six years since my awe of the NHS increased beyond birthing three children. Six years since I was separated from one 10-week-old baby in order to have another one ‘fixed’. ‘Fixed’ because it sounds less scary than ‘keyhole surgery’. ‘Fixed’ because fortunately a diagnosis of pyloric stenosis resulted in surgery, which meant E was better. And for that I remain grateful.

My twins were born at 36 weeks because E stopped growing at 30 weeks. Monitored so closely, the ambition was to reach 36 weeks. And to the day we could wait no more. E was 4lb 7, compared to B’s 6lb. 

At first E’s sick was deemed ‘posseting’, everyone called E ‘a fighter’. He was naturally greedy in his need to grow after finding this so difficult in my womb. And this worked for me. CM’s ability to posset was the thing which caused my anxiety as a breastfeeder, maybe it as just the way it was.

Over the weeks that followed E would put on weight, but would remain much smaller than B. E would drink, but E would be sick. I never thought of it as projectile vomit. The posseting just progressed and I had become accustomed to it. Those who witnessed it, including the fortunate GP who gave us our referral, gave it this term.

I tried everything. We went ten weeks without tandem feeding, such was the care and attention I paid to feeding E to stop him vomiting. I tried everything. Feeding him in stages, resting him in the bouncer before laying him to sleep, putting a wedge under the mattress, covering the mattress in muslins so as not to have to change the bedding due to the inevitable sick.

Infacol, gripe water… we graduated to Gaviscon, to comfort milk and then to stay-down formula. The vomit wasn’t quashed it just looked different.

We reached the point that the night before his ultrasound there was blood in his vomit. Calls to NHS Direct and a 5am doctor’s visit recommended the need for an ultrasound. With one scheduled all we could do was wait.

There is a huge benefit to hindsight. B and E lying next to each other on the day E was released from the hospital. Accepting their differences was just something I did. Appreciating with hindsight that E no longer looked healthy was the reality.Pyloric Stenosis in a twinWe were fortunate to live in an area with specialists and health visitors who ‘just’ went beyond. Our six-week check up was deliberately delayed by a fortnight so we could see the GP who was a specialist pediatrician. He wasn’t happy with E, and fortunately E took this cue- a couple of hours after his feed to vomit. We were referred for an ultrasound. 

A fortnight later we went for our ultrasound at our nearest hospital. Fortunately Mr J took the day off work. We had the ultrasound and were admitted.

We didn’t go home for five days. And in that time we travelled nearly 60 miles in an ambulance to a hospital able to operate on E.

E became a special case. It is unusual pyloric stenosis to go so long diagnosed. And because of this it made it difficult to find a hospital to look after us. At ten weeks E was no longer a priority from a baby-care perspective, in hospital- eventually stabilised he was no longer a medical emergency, ‘downgraded’ to a surgical emergency. Trying to find a bed for a baby in local hospitals proved impossible, fortunately a children’s ward further afield admitted on age not weight, E was able to secure a bed.

During my time in two hospitals and the aftercare which followed I became conversant with the facts, and appreciating that E an exception to the rule. It would follow that there would be an investigation into why E wasn’t diagnosed sooner. It would transpire that my attention to doing everything to keep E’s milk down was the undoing. If I had done less it would have transpired sooner. There is no lesson to be learned really.

But in this time I would be grateful to the renegades. Those who were willing to understand the rules and appreciate that there are children like E.

E continued to suffer from reflux after his keyhole surgery. I can’t begin to tell you how less aggressive reflux is. And yet, yes, it is still completely horrific in every parenting sense. We carried on until E was probably nine months with gripe water and Gaviscon.

I went to the doctor’s shortly after E’s surgery for a repeat prescription. I was surprised to be faced with challenge over the pyloric stenosis diagnosis. Pyloric stenosis is common on first-born males. E wasn’t my first-born. E continued to vomit after his surgery. It was this I took issue with. The difference between what I would understand to be vomiting and projectile vomiting.

Most importantly, I understood that it took over 24 hours to stabilise E after we were admitted following the ultrasound. E was severely dehydrated, shortly after admittance he went nil by mouth until his surgery.

By six months, he and his twin were identical weights.

This is why I know he had pyloric stenosis.

Six years on, the three scars of keyhole surgery can only be seen by those who know they are there.

Six years on, E remains slight in comparison to B.

They are both slight when all is said and done, but B’s face has always seemed wider.

Saying that, for their eighteen month check up they were identical in height and weight.

For non-identical twins, that’s pretty good going.Pyloric stenosis in babiesWhat can I tell you from my experience?

Parent instinct is the most important aspect of raising a child.

Friends, family and professionals will tell you their experience. 

You know your child.

You know you are willing to do everything to protect and nurture your child.

Research the facts.

Early on in E’s vomiting, a fellow twin-mum said “it’s not likely to be pyloric stenosis but…”. So I researched pyloric stenosis just in case. It means I felt a little more knowledgeable, and less emotional, when it was raised as a potential diagnosis.

I remember so vividly the hours which were spent at Sheffield’s Children’s Hospital. Feeling so guilty that amongst those on the ward we were the lucky ones- my child could be operated on and ‘cured’.

I remember not understanding how so many parents could leave their children, but not equating how this was such a regular part of the lives of so many families.

I recall the care of every nurse who worked on the ward. That whilst I had a camp bed next to E’s bed, that they would try to let me sleep if he stirred. 

That after a couple of days they found a comfier chair for me to sit in given I refused to leave his bedside.

I remember the guilt of asking the nurses to keep an eye on E whilst I nipped for a shower or some food. Given they had so many children in their care.

I remember that they encouraged me. They offered to order Pizza for me. They told me that there was a Starbucks next to the hospital. And a park.

I remember, knowing not how or why, that someone had blu-tacked a Red Arrows plane on the ceiling above my camp bed. That a friend had always told me the Red Arrows were the best because it was about being the best, not comparing, but aiming for the best, I wondered who had put the picture on the ceiling.

I remember being told that E couldn’t take anything into surgery, including his doidy (dummy). There was such relief being told I needed to get down to the surgical floor to see him- and if I could take his doidy it would be appreciated.

Pyloric stenosis.  It’s just another chapter in our story. A chapter which teaches us about how strong we can be. A story which teaches us that the people who work in the NHS are fantastic. That sometimes people have bad days, we all do. But without the NHS. I haven’t a clue where my family would be.

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