'It’s vital to take every opportunity to be your baby’s parent' - Kate’s story

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Kate's son was born at full term with Treacher Collins Syndrome. In this blog she recalls how she got more involved in his care.

Our son William was born at full-term in early 2018, affected by Treacher Collins Syndrome (TCS). TCS is a rare, genetic condition affecting development – particularly the way the cheekbones, jaws, ears and eyelids are formed. TCS can cause problems with breathing, eating, hearing and speech. There is a spectrum for TCS and therefore its impact varies between people with the condition.

We knew there was a 50/50 chance William could have TCS because of family history, but our scans were indicating that there was no sign of the more severe characteristics so I had enjoyed a pretty straightforward pregnancy, excited at the prospect of expanding our family.

Being mindful of the potential for TCS, I opted for a c-section to ensure that William’s arrival was calm, controlled, and that there would be paediatricians present should there be an issue with his airway. It was a completely life changing moment when he came out as it was clear straightaway that he had a severe version of TCS. He cried loudly, but it was immediately obvious that once he relaxed his small jaw compromised his breathing. So he was wrapped up, thrust in front of my face for what felt like a second, and then was whisked away to NICU.

Paralysed by the epidural from the c-section, I was stitched up and left in the recovery room before being moved to the ward while my husband went to NICU to be with William. He kept coming back to keep me updated, but it was all too much to take in. I think the staff and I were all in shock. I certainly was; I couldn’t stop shaking.

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Some time later, I was wheeled into NICU in the hospital bed to see my newborn son. William was covered in breathing equipment (which I later learned was CPAP), and monitoring equipment. My heart broke a little as the enormity of what we were facing started to sink in. We were devastated - for him, for our daughter, for us. It wasn’t just that he looked different, but that we didn’t know at that point the severity of the condition. We were told at birth that he had no outer ears, and shortly after that we heard he had a cleft palate – both of which had not been picked up on the scans while in utero. We didn’t know what was on the inside of his ears and whether or not he would be able to swallow or see.

I can’t describe that first 24 hours. I recall the NICU staff being very kind, but they were also rightly focused on making sure that William was stable and safe. As feeling began to return to my legs I visited my newborn son throughout the night, but I couldn’t hold him – all I could do was stroke his arms and legs through the side of the incubator.

It was decided pretty quickly that William’s needs were greater than could be supported by the NICU we were in, and the following day a team from the regional centre NICU at St Michael’s in Bristol arrived. I felt we were being rescued by knights in shining armour as they turned up with their enormous transporter incubator and emergency backpacks. But as William was driven off in an ambulance and my husband and I were left in the doorway of the hospital all I can remember thinking was: “This can’t be real. This is a dream. It can’t be happening to us.”

At that point, I felt incapable of being William’s mum. I was totally numb. Once we arrived at St Michael’s I became a bystander as a team of extremely competent doctors and nurses took over William’s care. I was quite literally incapacitated by the shock, grief, and the intensity of the NICU experience, and it remained that way for about two weeks.

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The days passed and I had an opportunistic chat with another mum who had been there for a couple of months already. She told me that from her experience it was vital to take every opportunity to be William’s mum, and it was like a lightbulb went off. I had almost forgotten that I was his mum.

From that point onwards, I took every chance I could to care for him. The nurses were brilliant in gently asking me and steering me to what was possible. I relied on their judgement as to what was safe. I started to change William’s nappy, I gave him little bed baths, and I cleaned his eyes. Around that time we also consented to a tracheostomy, and once that was in the breathing equipment came away from his face, and the monitoring slowly decreased. Once his airway was safe we were able to hold him more easily, and we started bonding with a lovely little boy.

We were in NICU for three months as we were trained in tracheostomy care, and things were put into place so that we could go home with all his supplies. During that time we learnt that William could see, he could swallow with some difficulty, and he could hear with the help of hearing aids. We applied for the Disability Living Allowance (DLA), William was assessed for a gastrostomy (which was done a few months later) and we got to know some of the people who were going to support us once we were discharged. It was quite a productive time in all honesty.

It was a huge day when we left. I had become quite institutionalised by that point, so we had been gradually taking William over to the Cots for Tots family accommodation house over the road, to build up confidence in caring for him out of the sight of the nurses. Nevertheless, when we walked out of the hospital with him in his car seat I almost expected to be called back and told there was a mistake.

William is now over a year old and thriving. He’s a really content, happy little chap and we wouldn’t change him for the world. I wouldn’t change what we’ve been through. I think I’ve become a wiser person and a more empathetic mum for it. It’s been life changing; but for the better.

To any parent in a similar position, or in NICU right now, I say remember first and foremost you are your child’s parent. You may be terrified by what is going on and feel out of control but that is normal. Let the doctors and nurses worry about the medical things – what your baby needs is your voice, your touch and your smell. You need to feel, see and be with your child too, to help you process what is going on and to remind yourself that you are their parent. Take every opportunity to get involved in their care. The nurses would not let you do something that wasn’t safe. Trust their judgement, ask for their advice and help, but make sure first and foremost that you are your child’s mummy or daddy. Good luck.