“Finding resources like Bliss and other parents in support groups has been a lifeline” - Sheelagh’s Story

After nearly two years of trying, with a bleak fertility prognosis, I had a positive pregnancy test three weeks before we were due to start a first cycle of IVF. We couldn’t believe our luck and treaded anxiously through the months ahead. My pregnancy was relatively smooth, with only some slight concerns towards the end that the baby was on the small side.

Our little girl was breech from 20 weeks and was therefore delivered at 39 weeks and two days by elective section at UCLH in London. Everything was very calm, organised and efficient. She was whisked away for a quick check-up after delivery as she did turn out to be a little small at 5lb 8ozs but was deemed in good shape by the neonatal doctors.

I finally got to hold her once we were back in recovery. The midwives tried to help her latch and seemed confused but not worried when she didn’t. We were then rushed off to the ward, ecstatic and oblivious.

On the maternity ward, our little girl got progressively colder despite lots of skin-to-skin contact. She continued to show no interest in feeding, and I started desperately trying to express colostrum into a syringe to give her directly. A heated cot made no headway to stabilize her temperature. Eventually a neonatal doctor appeared and took a deep breath before telling us our little girl needed to go to the NICU immediately. My blood pressure immediately went through the roof and I was unable to stand. Feeling shell-shocked, dizzy, confused, I waited and waited, counting on texts and photos from my husband as to what was going on.

Rhea spent the night in NICU in an incubator - she was now getting fed thanks to an NG tube and was in the right place. Feeling pretty unwell myself, I was relieved she was in a place where people were expert in minding new-borns, unlike myself.

I knew several people whose babies had spent a night or two in NICU after birth - this was totally normal and not something to panic about, I told myself. It was 3 March 2020 and the Coronavirus was starting to make the news, but aside from a little extra hand sanitiser, everyone in the hospital was still carrying on as normal.

The days following were a blur. Still affected by high blood pressure, visiting the NICU felt like an out of body experience. This little human, who I had carried and loved for months, was meant to be mine but I couldn’t hold or take care of her. How would she know me?

When I did get to hold her briefly, she cried as she tried desperately to root for milk but couldn’t latch. Her dad was brilliant, diving right in, learning how to tube feed, and reminding me that she was my baby. Despite being one of the bigger babies in the NICU, and being able to cry very loudly, she was having severe oxygen desaturations, unable to feed and hold her body heat, with no apparent reason why – the doctors were baffled.

Almost two weeks later we were transferred to Great Ormond Street (GOSH) by a children’s acute ambulance. We went straight to the ICU and the next day, our little girl underwent her first surgical procedure to look for a suspected oesophageal fistula. No such anatomical issue was found, but we went on to spend another couple of weeks in ICU in the best of care. I started to be able to get involved in her care and I pumped and pumped. Although breastfeeding attempts continued to prove futile, the most wonderful nurse even managed to get our baby to attempt a few light sucks of a soother. At this stage, we started to overhear staff briefings preparing to expect Covid patients and tensions were rising.

The evening we were transferred to the Koala Ward at GOSH, we felt relief - we were incubator free, and one step closer to home. The Head Sister came in to let us know about a new Covid policy - only one carer would be allowed in the hospital with immediate effect. Still recovering from my c-section, alone on a general children’s ward with a tiny baby, I was in a haze of trying to make sense of all the tests, pumping, learning how to tube feed, suction, keeping concerned friends and family informed, and communicate everything to her Dad who was distraught not to see her. The next couple of weeks were incredibly stressful; every day I was terrified of catching Covid or developing symptoms.

A brain MRI, cardiac echo, ECG, genetic blood tests, and video-fluoroscopy later, we learned of a small atrial septum defect but were no closer to a diagnosis. We knew that Rhea needed to be fed by tube alongside regular suctioning and I wondered, could we do this at home? After much badgering the nurses and doctors, I was signed off as competent to administer feed by NG tube. I breathed a huge sigh of relief driving through an eery, empty Central London to get home, where Rhea could be reunited with her dad.

The next few weeks were challenging. Rhea was increasingly unsettled towards the end of her hospital stay but I played it down, afraid of her not being allowed home. Her reflux medication was not working, and four weeks later we were in our local hospital with a baby who screamed all day and night. At the same time, she was found to have hearing loss on one side. It was beginning to feel overwhelming. Eventually however, with the right medication, and wonderful care from her community nursing team, at five months old when Rhea had her G-tube placed, she became significantly more settled.

Rhea will be two this coming March and while she is still fed entirely by tube, she has small tastes of puree and soft solids. She attends a fantastic local nursery who have trained their staff on how to feed her. We visit the specialist dysphagic clinic at GOSH every six months and have a diagnosis of isolated bulbar palsy. Like many NICU babies, she has a long road ahead, and lots of different medical professions involved in her care.

We remain optimistic that she will be able to eat and drink orally in the long term. Finding resources like Bliss and fellow parents in similar situations on Facebook support groups, has been a lifeline. There is plenty of advice out there for breastfeeding or even bottle-feeding mums, but long-term tube feeding can be a lonely and isolating road.

I hope Rhea’s story can give courage to other parents going through the early days - it does get easier.