Seeing my daughter intubated – Gemma’s story

Nothing about my pregnancy was straightforward. IVF, pre-eclampsia and HELPP syndrome all meant that I didn’t get the chance to enjoy any of it.

In order to save both our lives, my daughter was delivered via emergency c-section at 29+2 weeks. Frances did brilliantly well at first. She spent three and a half weeks at a NICU in Portsmouth before being transferred to our local hospital in Chichester. We were doing really well. I was aware of how fortunate we were that our daughter was such a strong little fighter.

Then that rollercoaster ride took a massive drop. Following her routine ROP test. Frances stopped breathing. She’d had a rare reaction to the eye drops, which led to her being intubated and moved into the intensive care nursery. The doctors and nurses were amazing. They reacted so quickly to stabilise her and make her comfortable – Suzi her primary nurse didn’t leave her side all day.

While this was all happening, I was at another part of the hospital having a check-up appointment and my husband was at work; our baby girl was on her own. I received a phone call from the unit, the minute the number came up on my phone I knew something was wrong and I didn’t take a breath throughout the call. I was scared, anxious and just wanted to get back to Frances. No matter how much they reassured me she was fine I had to see her for myself. Running across the hospital, I rang my husband feeling panicked and upset. I told him to get to the hospital as soon as he could. The worst thoughts were running through my mind. I was terrified of losing her and felt utterly helpless, knowing there was nothing I could do to change the situation.

The intubation was difficult because Frances’ airway kept closing while they tried to insert the tube. When I reached the unit, I was advised to wait outside as intubation is a distressing procedure to witness. My husband arrived half an hour later and we were finally allowed in to see our baby girl. Nothing could prepare us for how she looked with a tube down her throat, covered in wires with machines bleeping all around. Having left the NICU, we thought that this part of our journey was behind us and it felt horrific taking such a huge step backwards.

Frances didn’t look like herself anymore. Her face was all puffy from the drugs they had given her, she was pale as they thought she was fighting an infection too and she looked so small again – my heart broke. I was overwhelmed once again with feelings of guilt about her prematurity and the fact I wasn’t at her side when she stopped breathing. It was a tough 24 hours, where nurses and friends we had made on the unit did their best to comfort us.

The following day the doctors confirmed that Frances had had an allergic reaction to the eye drops. This was a huge relief because it meant it wouldn’t take long for her to get back on track to recovery.

As the day progressed, slowly but surely the tubes, wires and machines were removed and we were able to hold our daughter again. The doctors told me they had reported the reaction to the lead consultant, who in turn had reported it to the World Medical Council. They wouldn’t perform the ROP test on Frances again until an alternative to the eye drops was found.

Of all the ups and downs of our neonatal experience, this is the one that sticks with me the most. Firstly because it was the only time I’d seen Frances intubated. All of the other procedures like the blood tests and the feeding tubes were more routine and we were used to them happening. The machines had become white noise, and we knew the familiar sound of her sats monitor and what the beeps meant. The intubation was more serious. It looked horrifically uncomfortable and our baby looked completely unfamiliar whilst she was sedated. There were additional monitors with new sounds which were unfamiliar to us and made it so surreal. What should have been a routine procedure ended up being the most challenging in our journey and it illustrates just how fragile life is on the neonatal unit and that everything can change in an instant.

What was normal to the doctors and nurses was so alien to us, something we were unprepared for. I think that’s why it stands out and was so scary. Parents on the neonatal unit need to be made aware that their journey won’t be linear and that while huge steps forward can be made every day with your baby, the risk of going backwards is always there.

Frances is now at home. She is a happy, healthy four month old - surprising us every single day at how perfect she is.

If your child is intubated while they are on the unit, I recommend that you ask the healthcare professionals around you to help you understand what exactly is going on. When it is clearer in your mind why something is happening, it is much easy to accept the fact that all the procedures and machines are serving a vital importance.

Lean on those around you for support: nurses, other parents on the unit and your own family and friends will all help you to process this new reality. When your life is turned upside down, remember that you don’t need to face the changes alone.

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages.