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Bliss advent calendar day 11


In June, we heard from Catherine, whose daughter Priya was born at 29 weeks – less than a year after Maya, born at 23 weeks, had passed away. After only a few days, Priya became seriously ill and had to be transferred to a neonatal intensive care unit:

Priya was born on the 26 March 2015, weighing 2lbs 15oz. Eleven months earlier than that, I had given birth to another baby girl called Maya. When she was born I was hours away from being 23 weeks pregnant, but Maya died shortly after birth.

Priya's pregnancy had turned out to be more difficult than anyone had imagined. It took two cervical stitches and ten weeks of strict bed rest to stay pregnant for 29 weeks and one day, the gestation Priya was born at. We knew as early as 19 weeks that Priya would be premature; it was solely due to the efforts of the preterm surveillance clinic that we made it past 24 weeks.

Her birth was like that of so many premature babies – very clinical, with the focus being on delivering Priya as quickly and safely as possible before handing her straight to the neonatal team who had been quietly waiting in the corner of the room. She was quickly resuscitated, letting out a little squeak before being ventilated.

I had a brief glimpse of her before she was taken to the neonatal unit. I knew it would be this way, but seeing her wheeled away hit hard. It would be 16 hours before I saw her again. By that time she had come off the ventilator so I was allowed a cuddle – it was amazing, and despite all her wires she snuggled right in.

The first five days saw Priya settle quickly onto the unit. She had started milk feeds and was tolerating them well, had begun to put on weight and generally was making good progress. For such a tiny little thing she managed to move herself into all kinds of positions, and she was adept at pulling out her lines and feeding tube. One of the nurses affectionately called her a little pickle, and it quickly became her nickname.

We were euphoric – our little rainbow was doing well. Then when Priya was six days old we received a call to say she had been uncomfortable overnight; her stomach had swollen and an X-ray had shown air pockets in the walls of her intestine, features suggestive of necrotising enterocolitis (NEC), an infection of the gut, and with that our bubble burst. It was serious; they were preparing to transfer Priya to a level 3 neonatal intensive care unit (NICU) where there would be surgeons who would be able to operate in the event of Priya developing a perforation (hole) in her bowel. If perforation of the bowel did occur, then her chances of survival would drop quite dramatically.

We left for the hospital immediately. The last time we had seen our baby she had been wriggling out of her nest, but now she was on a ventilator and heavily sedated, and there was no sign of our tube-pulling little pickle. In that moment I truly felt we had lost her, and the thought of having to tell her six year old sister was excruciating.

The journey to the NICU passed in a blur of sirens and blue lights, I had cried the entire journey. Walking onto the unit was completely overwhelming – I was completely out of my depth.

That night and the following day were uneventful. Priya remained closely monitored and on the ventilator, and during this time we met with the surgical team. We were told that they were hopeful that Priya would respond to medical management, which consisted of antibiotics and resting the gut. Regular scans were carried out to check for perforation.

Friday 3 April 2015 was Good Friday, and it also turned out to be the day that Priya ended up having emergency surgery at just eight days old. Our biggest fear had happened – two perforations were detected on an X-ray. We signed the consent forms for the surgery and there really were no other options – without surgery she would die, with it she had a 50 per cent chance of survival.

The surgery lasted over four hours. She had 13cm of bowel removed and was left with a temporary ileostomy. When she returned she was critically ill, and the next 48 hours were crucial in terms of how she would cope with the remaining infection in her blood, plus the recovery from surgery. All we could do was wait. Friends and family remained our lifeline throughout – they refused to give up hope, and as we waited the minutes became hours and then the hours became days, and before we knew it, after 10 days of intensive care, our little pickle was beginning to come back.

Almost two weeks later I had my first proper cuddle with Priya, following encouragement from the Bliss nurse Julia. It was this cuddle, photographed by staff, that remains one of my favourites, it shows Priya looking up at me and it was a moment that at one point I didn't think I'd ever have again.

Priya was transferred back to our local unit on 26 April, and on 31 May, after 67 days spent in hospital she came home, weighing 5lbs 1oz. There were some problems with weight gain due to her illestomy, so at 16 weeks old she underwent a second operation to reverse the stoma for good.

You would never know, looking at Priya now, that she was premature, or that she had had such a fight to survive in the early days, but she did fight, and she has the scars to prove it. But since then Priya has never looked back. She has gained weight and today at 13 months old she is a healthy 22lbs. Her first birthday was spent literally a world away from where she began, soaking up the sun and visiting family in South India.

When a baby is poorly and has to remain in hospital, their parents want nothing more than to stay by their side until they recover. Sadly many hospitals don’t have the accommodation available for families to enable them to do this. Support our Christmas appeal to help us keep babies with their families.

If you have been affected by any of the issues mentioned in this post and would like to access support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk

View the Bliss advent calendar

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