This post is long overdue. Possibly because it will dredge up so many emotions & feelings that I have battled hard to contain & compartmentalise. But the emergence of many articles and posts on the same topic in the last few weeks have made me realise that there are other mothers out there who may benefit from reading this.

The Beginning

I had the most perfect pregnancy for the nine months that I got to carry the most precious cargo. My labour went smoothly, but when my waters finally broke, we discovered there was meconium present. This should have meant an emergency C-section straight away, but thanks to one of the most arrogant registrars on the planet who decided he was going to work through his repertoire before finally giving up HOURS later to go to a C-section, my beautiful baby was born severely oxygen deprived (before you ask, no, I never sued the hospital, even though I had a darn solid case. I wish I had, as more babies have died there since, due to similar negligent behaviour. Just add that to my guilt pile). Anyway, I digress.

We were only given a quick look at our baby before she was whisked away to ‘Special Care’. No one followed up with us or told us how dire things were. My first inkling came via a trainee doctor and a Polaroid. The poor baby in the picture was hooked to machines, with pipes and tubes out of every orifice. “Here’s a photo of your baby, thought you might want it in case she didn’t make it.” I did what any sleep-deprived person who had just had major abdominal surgery would do: I screamed, shouted, and demanded a real doctor!

In my new private room, I was given an audience with a team of consultants, not one of whom could give me a sensible answer. My husband arrived later and it finally started sinking in: we had one sick baby. She was not conscious and barely breathing on her own. From 9 months of ‘So-Right’ suddenly everything was ‘So-NOT-Right’. We just didn’t know what to think, feel or even do. I didn’t know what my daughter really looked like!

The next morning, I was woken at 5am. When I reminded the midwife I had refused the morphine injections because they made me vomit, she said my daughter was failing fast and they had called a team from London to come and get her. Get her and take her where??? To London? Without me? My husband arrived at the hospital shortly after and I was wheeled in to say goodbye to my baby. All I remember thinking was that her elbow was really soft: it was the only part I could touch. She had a tension pneumothorax shortly after, and they had to cut her chest and insert a tube to rectify this. It took the team 4 hours to stabilise her before the 60-minute blue-light express to London. My husband was not allowed to travel with her, so he followed on the train. He came home later that evening, curled into a ball on the spare bed in my room, and just said, “She’s really not well.” I couldn’t physically reach out to him because of my surgery, so I stroked his ankle in a pathetic attempt to comfort him.

Moving Along

The next few weeks of our life took on a surreal quality, as any other NICU (neonatal intensive care) parent will verify. We could quote numbers, stats, technical terms…it was all that we had to hold on to. The NICU was like a war zone, with the constant alarms, death and sickness. We didn’t know which baby would die and which one would go home healthy. Experts say parents of NICU infants experience multiple traumas, usually beginning with the delivery, which is often unexpected (I felt completely violated after my caesarean experience). The second trauma is seeing their own infant having traumatic medical procedures and life-threatening events, and also witnessing other infants going through similar experiences.

We couldn’t touch her. She wasn’t awake. When she finally woke up, I held her for an hour solid, just in case it was the only time I would hold her. She had major nerve damage and didn’t like being touched much, so I had to wait till she was falling asleep in later weeks. My husband did the majority of the caring, feeding & bathing at the hospital. I expressed milk and took photos. We did laundry, cooked meals and went shopping, with a carseat in the back seat, but no baby. I hated everyone that got to walk around with their nice, normal babies. Just getting out and about was a triumph of mind over matter; we lived in a small town and everyone knew I was pregnant, so where was the baby? My life shrank to our house and the hospital. And then without much ado, she was sent home.

Home Time

We still had no clear idea how the next few months or years were going to play out, given the dire predictions: “She won’t hit milestones, she probably won’t walk, she probably won’t talk”. She had physiotherapy every day, either with me or a PT. She still hated being touched much. So we sort of co-existed in an uneasy truce. She had horrendous colic, and every new formula milk exacerbated her pain. We spent hours walking, driving, rocking…anything to stop the crying. My husband and I didn’t talk about our thoughts or feelings, because we just couldn’t face that can of worms. We just forged onwards relentlessly, united in our mission to give our child as normal a life as possible, for as long as we had her.

I fell apart fairly quickly with no network & no support. Think post-partum depression on steroids (I know now this was PTSD). So I duly swallowed the pills prescribed and continued to function. Everything was timetabled, down to her crashes, which usually meant a Friday or Saturday night spent in the emergency room. We knew our favourite nurses and doctors by name and they knew our baby. Terror and joy walked hand in hand for us; hit a milestone, get some new illness. Caring for myself came second to everything else. Guilt dogged every step. I could never shake the feeling that I had ‘broken’ my baby. That I had failed her. My body was supposed to nurture and protect her, and I failed. My husband would do his best to get this idea out of my head, but logic is no match for guilt. I had some close friends from my ante-natal group who tried to keep an eye on us and keep us close as much as possible, but these were all new mothers with trials of their own. And honestly, when you feel the spectre of death looms over you, you try and keep your gloom contained.

Fast forward almost 9 years

Given the trauma she suffered, five years was a good estimate. She beat the 5-year marker. We had a blow-out party to celebrate. We had our hairy moments along the way, but she made it through every one. We’ve made it 14 months now (knock on wood) without any real concerns. But every time she forgets something, or falls over, I wonder, “Is this a new symptom, a new sign?”. It’s called vulnerable child syndrome and I’m trying to shake it out of myself; she never felt the effects of it because we made a conscious decision to let her live a full life, including the normal falls, cuts & scrapes.

But there are things she can’t handle, like heat. She passes out or has a fit if she’s too warm. The older she gets, the more I worry. Coddling away and explaining, “You had a fit, passed out and wet yourself” is far different with a 4-year-old than a pre-teen. She has a pedal-to-the-metal, hair-on-fire personality, which means secretly, I am always in knots praying to the forces of the Universe to keep her safe. Fit-free. Tumour-free. The normal parent prayers, but with a grim, graphic, first-hand knowledge of what worst-case scenario looks like. Ask any parent who has signed a Do Not Resuscitate form.

Life as I know it

My post-traumatic stress takes the form of flashbacks. I panic every time a beeper goes off anywhere. I jump at loud noises. I couldn’t pass an ambulance for about two years after she was born without bursting into tears (I’m an ugly crier!). I emotionally distanced myself from her because I didn’t trust that the final good-bye wasn’t hovering around the corner. Over time, this has mutated into depression & anxiety, and occasional insomnia. Bouts of therapy have helped. Talking to friends, reading blogs, researching has helped. The fact that she is socialised, reads, can count, and tie her laces, helps. But I still sleep almost fully clothed, or with a full kit close by, never confident enough that I won’t need to dress in 30 seconds and fly to the hospital.

Some nights, I find myself sitting in the dark by my daughter’s bed, inhaling her special sunshine & honey smell, muffling my tears into one of her shirts she’s carelessly discarded on the floor. Some nights, she wakes up and makes me climb into bed with her. She’ll cuddle me and pat my hair and say, “There, there, it’s OK. I’m here.”

It’s like a tiny light in the night… I dare to dream of a future for her. With her. For now, that’s enough.

If this is your story or someone you know

There are so many more resources out there. In the USA, there is the March of Dimes NICU program. And Hand to Hold. There are books to read (try This Lovely Life: A Memoir of Premature Motherhood). In the UK, we’ve got Bliss, and the Parent Support Group at Great Ormond Street Children’s Hospital.

Survival tips

Eat healthy, sleep as much as you can, ask for help, forgive yourself, forgive others (because you are going to get some dumb questions & suggestions), accept that it’s not your fault, accept help, get hugs, go easy on the coffee, meditate/pray, and make sure your partner is doing the same.