On Saturday 27th September, Bristol Mum reader Emily McGuinness is holding a fundraising event in aid of the Neonatal Intensive Care Unit at Southmead Hospital and the Stroke Association. Today on Bristol Mum she shares her story behind her reasons for organising this fantastic event. 

“In 2011 I fell pregnant with my second child. Already having a 3-year-old son Oscar my husband Luke and I were looking forward to completing our little family unit. We went for our 12 week scan which was all fine.

The 20 week scan started fine until the sonographer said she wasn’t happy with some of the readings and went to get her supervisor. I was totally oblivious to what was going on but Luke had twigged that something wasn’t right. The supervisor came in and did a scan and told us that the nuchal fold was thicker than it should be.

I was still a bit unaware as to what was actually happening. They took us into a private room and explained that the reading could mean the baby had Downs Syndrome or other problems. My whole world came crashing down at that point and I let out what can only be described as a primeval cry whilst choking on tears.

Within days I was back having another scan with the specialist who confirmed that the fluid was thicker than normal. I had a further 4 scans with him and an amniocentesis was discussed. However I was guided by him and did not have one.

I couldn’t bear to look at the screens when he did the scans, I didn’t want to look at what could be my sick baby, so I asked them to turn them off. At the final scan he told me the fluid was now in the correct parameters and I remember taking a huge sigh of relief. However he went on to say that the baby’s heart was the wrong shape and he had concerns so I was therefore referred to the heart specialist at St Michael’s Hospital. I was in free fall again.

The likelihood of Downs Syndrome had gone but now there appeared to be issues with the heart. The heart specialist saw me 4 times. The baby’s heart was the wrong shape and was surrounded by fluid. She had not seen it before but ultimately didn’t think much of it. My pregnancy was therefore very traumatic. What should have been a happy time was full of anxiety and fear.

On July 9th 2012 my daughter Isla was born at Southmead Hospital. The same day and pretty much the same time as my grandmother’s funeral. It was a difficult day, knowing I was finally going to find out if my baby was sick.

Isla was given straight to Luke but she started turning blue with bubbles coming out of her mouth so was taken straight out of the room. The midwife told me that Isla had been taken to NICU. I was finally allowed to see her and touch her for the first time 7 hours later when I was taken into the Intensive Care room.

It was like another world. A large darkroom full of incubators. It was a very sombre room full of very sick little babies with monitors pinging all the time. The nurse got Isla out for me to cuddle. She was so tiny and vulnerable, she had wires and tubes everywhere so holding her was tricky. Whilst she didn’t need oxygen, she needed to keep her head right back to be able to breathe. It was a world away from holding Oscar for the first time, I felt like I was going to break her. It was a short cuddle because Isla needed her rest so she was put back in her incubator.

Isla was moved to the high dependency room after a few days which was a much smaller brighter room. I was able to hold Isla whenever I wanted and I was getting used to the tubes and wires. It was during these first few weeks that we started to learn that Isla was a very sick little girl.

Every morning and evening the Doctors would do their rounds and discuss each baby. I tried to be there for this each day to find out what was in the pipe line for Isla.

She had been having x-rays and scans and this is when we found out that her heart valve had not closed and was pumping blood the wrong way round her body into her lungs. She had respiratory issues and although she still didn’t need to be on oxygen, the only way she could breathe was to literally have her head leaning all the way back touching her back. She had a floppy larynx and there was talk of her having a tracheostomy which was terrifying.

One day the ENT team came over from the children’s hospital to take a closer look. I was holding her whilst the Dr put a camera down her throat. I couldn’t bear it though, she was screaming and the look of fear on her face set me off and I had to go running out of the room. Isla was losing a lot of weight and it turned out she had severe reflux. The last thing I wanted was for her to have an NG tube but I had no choice. She was NG fed for the first 12 months until she had a tummy PEG last August.

I stayed as an inpatient at Southmead for 2 weeks. I was suffering with terrible headaches and the Dr was concerned that the pain relief I had been given for stitches was seeping into my back. I was therefore instructed to lie flat for days so the fluid couldn’t move. This was impossible for me! I spent my days in NICU with Isla and was breast-feeding her also. There was no way I was not going to see my baby.

The headaches soon went though and thoughts turned to us both coming home. I was determined that we would both be coming home together. After two weeks however I think it’s fair to say I was broken. I had not had any proper sleep since she was born. I would traipse down to NICU several times a night to feed Isla. I was on a ward with mums and their babies and whilst I was happy for them it was heart breaking for me. I was missing my son and things were obviously affecting him too.

It was clear Isla wasn’t coming home any time soon so I made the heart wrenching decision to come home. Walking out of NICU for the first time and knowing I wasn’t only a ward away was awful. I just wanted the ground to swallow me up, but equally I needed to be as fit and healthy as I could be to look after Isla.

I visited every day and soon Isla was moved into the Special Care room. This was a big room with lots of babies, all of them premature. I remember saying to Luke how tiny these babies were and how terribly sad it was but then these babies started going home and Isla still remained. It was around this time that it sunk in just how sick she really was.

She had a spell in the children’s Hospital as we were facing the prospect of her needing open heart surgery. Thankfully she wasn’t as bad as they first thought and she came back to NICU. It was nice to come back to somewhere familiar as we had got to know all the staff. Isla was one of the few babies born at term so needed stimulation. She had a cot full of toys and she gave the cleaner her first smile!

The conversation was had many times about her coming home. I got my hopes up on so many occasions that I gave up thinking about it in the end. The main thing keeping her in NICU in the end was her weight. She was being sick constantly that no food was staying in her stomach. She was and still is fed by a pump that slowly pumps the milk into her tummy.

She finally came home after 10 weeks in NICU. The relief was immense. Luke and I didn’t tell anyone she was coming home. Firstly in case it didn’t actually happen and secondly because we wanted her all to ourselves. It’s difficult to convey in words what it is like having your baby in NICU.

There is so much more I could tell you and so many more stories regarding Isla’s care and recovery. It is a time of blackness. It was the bleakest time of my life and no parent should have to go through it. But the care the babies get in NICU is second to none and that is why I am planning a fundraiser. Each and every member of staff looked after her fantastically well and if it wasn’t for them she wouldn’t be here today.

On September 27th 1.30-4.30pm at The Eastfield Inn, Henleaze there will be stalls, face painting, cakes, lucky dip, crafts, raffle and much more. The event is being opened by the Lord Mayor and Anna from Disney’s Frozen is the special guest for the children. There will be magic shows, live music and you can sit in a Police car.

This is a joint fundraiser for the Stroke Association as my father has had a series of strokes over the years. Please come to the day or make a small donation on just giving.”

www.justgiving.com/Emily-McGuinness
www.facebook.com/IslaAutumnFayre