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Baby Girl - Dave's Experience

We knew from 26 weeks’ gestation our daughter wasn't well. What we didn't know was how long we'd be away from home or the impact it would have on our lives.

Before I start I should say that no two people will have the same experience of ICU; at the end of the day you have to do what works for you and be kind to yourself.

Isla was born in a better state than expected (I hate to think what they expected) but she was whisked straight off to NICU (Neonatal ICU) and it was 8 hours before we could see her. When we did, she was in a bad way. Her monitor alarms were constantly binging and she was clearly a cause for concern for the doctors and nurses.

Having been through a traumatic pregnancy and suffering pre-eclampsia, you’d think my wife had already been through enough. But she was actually placed on a ward with lots of new mums learning to breast feed - while Isla was in critical care away from her. She was asked at least 3 times where her baby was.

Looking back there's no way we'd let ourselves be put in that position again. It is fair to say that this whole experience has changed us and we've learned to speak up for ourselves much better. Naturally we were, and to some extent still are, very placid and patient but we're now much more confident and open about challenging situations and questioning what we're told. It took the doctors summoning us at 4 in the morning to say goodbye to our Isla, as they didn't think she would last much longer, for us to change. After spending 2 exhausting hours by her side, they decided she was stable and we should go and sleep. That, of course, didn't happen. We refused to go back to a room filled with new mums and babies. It had been hard enough being on a ward full of happy families before this had happened. Having now gone through the trauma and heartbreak of thinking we were saying goodbye to our baby girl, being told to go back to a shared ward was utterly incomprehensible. As a short-term solution the nurses found us a side room, before moving us to an actual ward with a private room.

Meanwhile, Isla was deteriorating rapidly and they had a suspected diagnosis. She had Long QT Syndrome. They stopped all medications which were potentially making it worse and arranged for a hospital transfer to Alder Hey for her to be fitted with a pacemaker. That was the first scary consent form. They were very worried she wouldn't make the ambulance ride. We held her hand for as long as we could and said good bye again. My friend came to drive me there (I was in no state to drive) and followed the ambulance down the M62.

When I arrived on the ICU there were about 20 people working on Isla. It was harrowing. My hand was shaking signing the surgical consent. The form basically said reason for surgery 'to give a chance of life'. Possible risks 'death'. They said I could stay outside the ICU while she had the procedure or go home and come back later. I decided to go back to be with my wife and family while waiting for the phone call. At the time I remember feeling like I'd signed her death warrant. I knew that wasn't the case and she'd have died without it but it was the responsibility of having signed that paper. It was little comfort that realistically things were out of my control, ultimately I'd set the ball rolling.

The hospital room back in Manchester was only really meant to have 2 visitors during visiting hours. It was now 11pm with my wife, her parents, her sister and boyfriend and me and my friend who'd driven me, all packed in. Fortunately the staff on the ward were aware of and thoughtful about our situation and even brought us a pot of tea and biscuits. We sat and tried to take our minds off the fact that they said it'd take 2 hours and it'd been 3.

Waiting for your little one to come out from surgery feels like life in slow motion and every scenario and outcome goes through your head. I paced around the room, my eyes leaking constantly and ate Haribo while my tea went cold. Pacing is how I cope. It drives my wife nuts. I can't remember if anyone spoke the entire time, I presume they did, but it was like I wasn't really in the room. I had cried from the moment I signed the consent to about an hour after receiving the phone call saying it had gone well. I just knew I wouldn't have been able to handle bad news alone. I was bad enough when it was good news. As my phone rang the nurses on the ward gathered around to hear the results. She was stable and we could go see her. The doctors warned us she wasn't out of the woods but the sense of relief was indescribable.

We had a room arranged at Ronald McDonald House and when my wife was eventually discharged (she had high blood pressure) we moved our things over to the charity accommodation. Nothing can prepare you for living at a hospital. Walking to the hospital every day not knowing what state your child will be in. Walking up the corridor, heart racing. 'Who will be the nurse today?', 'What will the plan be today?', 'Will she survive the day?’. Just during our time on ICU (not including HDU or the ward) we had 53 different nurses and 26 different doctors and consultants.

They all tell you to ignore the monitors. They are for them, not for you. It's impossible. By the time our 4 months on ICU were up I think I was more than qualified to wean off ventilation and read an ECG rhythm. If it helps you, do it! I found learning all these things and watching the monitors helpful. My wife didn't and hated it. The one thing we had in common though was, at the end of the day, we could both hear the alarm sounds of the ICU - even in the shower back at McHouse (as it's commonly known). The emergency buzzer still haunts me now, 2 years on. Even when you know it's not for your little one you still instinctively look at them, at the monitor, at them, at the nurse, at the monitor. It's an awful sound.

If it is for your child, be prepared for a stampede of medical professionals. The speed they arrive at is impressive. Ninja doctors appear. One will climb out from under the bed, one will descend through a secret trap door above, three will jump out from behind the monitors and a doctor who's had too long a shift will just crash through the wall leaving a doctor-shaped hole to be repaired later. OK, this might be a slight exaggeration, but it's reassuring how quickly they respond.

The nurses will tell you to just to be there and enjoy your baby. Take in their smell and cherish every moment with them. This is extremely difficult in an environment where you can't hold them and you fear they won't survive the day. It makes bonding very hard and it makes leaving them equally hard. The thing is, you have to do both. You have to look after yourself. You have to eat, you have to drink, you need time for yourself for sanity purposes. It's much easier said than done but as you start to get to know the different doctors and nurses it becomes easier to treat yourself to an overpriced Costa.

Our journey through ICU was different to most babies with cardiac problems. Isla is a rhythm baby, which is reasonably rare in itself, she didn't need open heart surgery like many other cardiac babies. We saw countless babies go for surgery, go into recovery, then go home in a matter of weeks. There were times that we wished our daughter was a 'simple' stent surgery and we could go home in the next few weeks. During our 4 months she suffered 2 cardiac arrests and countless arrhythmias. At the worst times we did lose our cool. It didn't help. We were never rude to the staff but we felt helpless and it seemed they were fighting blind against a condition they hadn't witnessed in such a young baby.

However, one outburst did prompt them to offer us psychological support. This was fantastic. It helped us both come to terms with our situation and deal with some of the turmoil ahead. It also taught us to look after ourselves. If you are offered this level of support my advice would be to take it, even if you don't think you need it. You might well learn something about yourself and learn some valuable coping techniques for a situation you may soon be in.

As parents, we both felt responsible for the position our daughter was in. We knew we hadn't done anything to cause it, we were told by doctors, geneticists and consultants it wasn't our fault, yet the only people we could blame was ourselves. The psychologist really helped us with these feelings and come to terms with Isla's condition. My wife and I did the sessions as a couple but we didn't have to. It is fair to say she helped us both in different ways. I ended up having a very important role in Isla's treatment, my time with the cardiac psychologist really helped me shoulder the burden of this responsibility and deal with the accompanying emotions. Ultimately you take from the sessions what you need but I found it invaluable.

Personally, I spent nearly every waking moment on Google researching Isla's condition and the best ways to treat it. This did earn me the nickname of Dr Google, and it's often the worst thing to do. However, in my case it saved our Isla. I found help in America which changed everything (that’s a story for another time). The doctors are actually very receptive to discussing plans and talking about ideas. They will happily explain things to you when they have time. It probably helps if you don't use Wikipedia as a source but you shouldn't be afraid to challenge decisions and seek other opinions. Clue yourself up as much or as little as you want. Sometimes ignorance is bliss. Sometimes a little knowledge goes a long way. Remember the doctors have hundreds of patients to care for. You have one patient to care for. Now I know they're not your patient as such, they're your baby, but they're your responsibility. Work with your doctors, not against them.

I wouldn't say we underestimated the financial impact of living at hospital for so long, we knew it could be expensive, but trying to live off maternity pay coupled with sick pay severely ate into our savings. We quickly learned not to get sucked into buying expensive coffees and sandwiches and to go for slightly cheaper hospital cafe alternatives. My wife was expressing breast milk while she was able, and the hospital provided meal vouchers as an incentive, which really helped financially. Expressing breast milk while your baby is on ICU is an interesting topic in itself (obviously I didn't do it personally, now that would be a very interesting topic!).  We learned to save money where we could. Although not the cheapest supermarket, we made good use of Sainsbury’s across the road from the hospital so we could make ourselves food back at McHouse. You have to leave ICU when it's handover anyway so we took the opportunity to go make something nice and have a break without feeling too guilty for being away. Little confession, we did in fact break a microwave at McHouse. It was mortifying! The microwave was slightly too small for the bag of food we were nuking, and it stopped rotating. All of a sudden sparks were flying (not for the first time at McHouse... believe me!) and the microwave was on fire. We did own up to the damage and were incredibly grateful we didn't have to pay for a new microwave! I'm sure there's a place in hell for people who blow up microwaves in charity accommodation but it was a genuine accident!

My last piece of advice is to make sure you laugh. Even if it's hysterically. My wife and I often left ICU at 11pm laughing. People wouldn't believe we had a critically ill child. Sometimes we wouldn't know what we were laughing at. Sometimes it would be an inappropriate joke. It might be something that happened during the day. We (don't tell the nurses) used to play Kiss, Marry, Shag using the nurses, doctors and consultants of ICU as pawns in our game. (It's stacked massively in the man's favour but don't let that put you off!). Speaking to ICU friends they actually did very similar things! It's ok to have a laugh. Do whatever it takes to find a smile each day. It may seem like it never rains but it pours but to quote Brandon Lee in The Crow: "It can't rain all the time."