When your baby is sick or born premature, there’s one thing you’ll undoubtedly experience: receiving bad news.
The thing is, it’s such a tense and emotional experience anyway, that it can be hard to comprehend and process individual pieces of bad news without feeling like you’re losing it.
Having twins born at 27 weeks’ gestation was unquestionably the hardest thing I’ve been through. Throughout their nine week stay in hospital, there were many ups and even more downs.
In that time, we witnessed our sons:
- Fight infections
- Undergo blood transfusions
- Require breathing apparatus to stay alive
- Deal with heart concerns
- And much, much more
Each of these events triggered feelings of sadness, fear, helplessness and a plethora of unsavoury emotions.
However, there was one incident – which struck just 48 hours into fatherhood – that sticks out as the single worst moment of my life.
A doctor approached us to give an update on the boys’ health and report back on their first round of heart and brain scans. While our second-born son was given a fairly positive outlook, our firstborn was in a much more worrying condition.
“He has a brain bleed”, we were told. It was a bad one; a grade 4 (out of 4, which is the worst possible prognosis). I was instantly concerned, and then felt the blood drain from my face as we were told that he may have developmental delays, possibly some physical impairments and disabilities due to long term brain injury.
He was two days old, extremely premature, and now given a catastrophic diagnosis that might mean he’d never live a happy and fulfilling life. It wasn’t fair. Why were other babies born at term, and with no health concerns?
A nurse brought me a chair while I tried to process the information; a timely intervention, as I was sure I was on the verge of collapsing. When I could summon the energy, I dashed out of the NICU room and cried hysterically in a bathroom.
This is perhaps the tipping point that meant the NICU journey became a psychological one for me, as well as a physically draining experience.
How other NICU parents dealt with bad news
To learn more about parents’ reactions and coping mechanisms, I asked my Instagram followers to share their experiences of receiving bad news in NICU. Here’s what some of them had to say…
Honestly, I screamed and cried. When my daughter was 4 days old, she had to be intubated. She went from a level 20 ok CPAP to a level 380, to then needed to be intubated. I remember just screaming. My husband asked all the difficult questions because I was just inconsolable.
The thing that truly helped me cope, was turning off my cell phone. I didn’t want to answer any messages or phone calls. It gave me a chance to process what was going on.
Just cried and got angry. Mainly because I was in ICU and they were saying I couldnt go see her when shed had a collapsed lung. I got real mumma bear mode and told them if they didnt let me go I’d pull the lines out and go myself. Not quite sure how I would have done that given how unwell I was but I was willing to do anything to see her
So, from the start Edie wasn’t expected to survive. She was a 23 weeker, born in particularly poor condition, received no steroids or magnesium in utero and came out making no attempt to breath etc. They though she was still born. At 2 weeks old they were going to turn off her life support (worst day of my life and the ones prior to that were particularly horrendous and after too).
For me, coping came in different forms. Some days I’d run to the expressing room when the doctors approached for rounds. Hearing the significant doom and gloom would have made it all come crashing down some days. So I’d remove myself from the situation. Sometimes coping mechanisms were involuntary; my body protecting itself by seeing me “away with the fairies” for periods of time. Sometimes I’d seek out those positive people who’d be naturally programmed in telling me all will end up well (even though I knew full well they couldn’t ever know that and that in actual fact, that actual outcome was highly unlikely). In the beginning and for a while I said no cards or gifts. That would have been too much for me. In fact I told my family not to tell anyone she had been born. I know myself; I know my body and my brain and I knew that a message of sympathy or pity or something that wasn’t worded right to me would have seen my demise. So I said no to all that until I was ready. We’d be at NICU all day until late at night. We’d try to make sure we left when she was having a “good 5 mins” but we never rang once we were home. To cope I had to be allowed to be near her all day and if you tried to force me away for my own good, you’d feel my wrath. You might think it’s no good for me but there were days when it was all that was good for me. Some days so blocked things out.
My husband helped me cope and there were days that I coped simply because he wasn’t so much.
Oh!!!! How could I forget?! I became very superstitious. I developed very particular irrational, superstitious, repetitive (bit secret) behaviours. I wasn’t diagnosed with this, simply because I didn’t see a doctor but if I didn’t develop health OCD then I’ll eat my hat.
I didn’t really believe it was happening, it honestly felt like I was watching it on the TV. They both had sepsis, Twin 1 had a grade 3 IVH at 2 days old and developed NEC later on so there were some very scary times. I was always more upset after they got through things.
With my first i think I cried once the whole time he was in NICU…. he was born at 25wks… had both his steroids unfortunately couldn’t have the magnesium as I took a bad allergic reaction to it…. he was born sepsis as they left me too long with infected waters (51hrs with broken waters 30hrs with infected)… the only time I cried was when I was told he had a grade 4 IVH and he was failing to thrive. And the only reason I cried is I knew the prognosis.
With my second…. I was well informed… I’d been here before. The way I coped was concentrating on my son at home and concentrating on expressing as much as I could for Evie. However with Evie I broke down more. I let myself cry when I needed to… it was hard with Evie as she got a staph infection in her pic line… she needed reintubated 3 times while she had it. They couldn’t get it under control and had to discuss her every.single.morning with the infectious disease team in childrens hospital as no antibiotics were working. She was the first baby in northern ireland to need spinal fluid sent to England (it is a newer test as her CSP came back inconclusive for meningitis). She got fluid on her brain and swelling around her heart chamber from the infection. Her veins collapsed after being in hospital for 2months due to all the injections and tests she needed because of the infection. And she had to have bloods given through her scalp. The doctors and consultants were highly worried when she was born as she was purple all over her head from bruising. I found it very hard the second time around and I think its because I knew I could break at times as I wasn’t alone in my journey ❤️
Cried, cried and cried constantly thinking how unfair it is that my little twin 2 was going through the unimaginable and there was nothing I could do to help her. For me I felt like it was 1 step forward and 5 steps backwards so I always asked loads of questions to understand why this was happening and the NICU staff explained it all very well to us. Having twin 1 at home has helped me stay positive as I know she needs me to be the best mummy to her, currently on day 226 and still cry on a regular basis thinking of all the negative experiences, trauma, invasive medical procedures and major surgeries my little girl has gone through in her little life so far 😢 we also chose not to share any photos of our twin 2 for a few months as we felt she deserved to have her vulnerability respected!
How to overcome the tough times
Everyone reacts to and copes with adversity differently. The key thing that helped me to move on (or attempt to) from the low points was to keep myself immersed in the care routines and take every opportunity to bond with my sons.
Throughout the experience, I also started to see the benefit of taking some time to myself. It’s gut-wrenching to leave your baby at the hospital every day, and it’s natural to want to spend every waking minute by their side. But taking even just five minutes to grab some fresh air or talk to someone outside of the hospital setting can help to keep your mind on track.