When this mother gave birth, her daughter was unable to breathe on her own – for 11 long, agonising minutes. These days she has a different attitude to the developmental milestones that many parents take for granted.
The author of this piece asked to be anonymous for her daughter’s privacy.
I’ve always found the concept of baby showers or decorating the baby’s room before they’re here or naming the baby before birth just a bit too much like counting your chickens before they’ve hatched.
I used to only give a hesitant congratulations when friends announced their pregnancies. I just had a feeling that there is so much time and stuff that has to happen before the baby is in your arms. I’m not a particularly negative person but life is difficult, shit happens, and historically, labours are dangerous.
Still, I didn’t actually expect that anything would happen to me.
My first pregnancy was typical and although I was induced after my waters broke our baby showed no signs of distress until second stage labour. At this point the room filled with people and my memories are both blurred and sharply focussed.
I remember: Our midwife stating ‘I think she can do it’ when the obstetrician requested a c-section. Our baby being hauled out floppy, blue, and silent, placed on my stomach then rushed to the resus table; the time passing long enough for me to ask the midwife student if my baby was alive; watching my husband stand over our baby while she was given oxygen; and I remember the whole room happily repeating our daughter’s name when we found out ‘it’ was a girl.
She didn’t breathe by herself for 11 minutes.
Our baby was transferred to NICU and her core body temperature cooled to 33 degrees. My husband and mother witnessed this while I remained in the maternity suite. I can only imagine what that was like for them.
The idea behind cooling the body is that it slows everything down, allowing the brain to recover as much as possible. When developing this intervention in New Zealand the trials were so successful that they had to be stopped as it became unethical not to use it on all oxygen deprived babies involved.
The midwife student kept me company and I was so glad that I’d agreed to her involvement. The rest of the night was a blur and in the morning we had to think what to tell people.
I wished that no-one had known I was in labour so that we could hide away for a while longer. Our wee girl showed signs of brain damage plus a whole load of associated medical issues caused by oxygen deprivation. She experienced seizures in the first 24 hours.
For three days we sat beside our baby girl limiting stimulation. I expressed. We worried. We talked to specialists. We analysed every word they said. We talked and cried over worst case scenarios.
My husband even recorded her crying once, just to show me she could make noise and in case she didn’t again.
Returning to the maternity ward was hard too. The only thing worse than being in a maternity ward full of crying babies, is being in a maternity ward full of crying babies desperately wishing you had your own crying baby.
MRI scan results showed global brain damage and we were told to expect anything from not being able to walk or talk to struggling a little with spelling or having a floppy arm when tired.
It was terrifying.
I remember discussing with my husband whether we’d prefer walking or talking. My husband pointed out that we might not get either.
On an outing we walked past university and I became tearful that going to university might never be an option for our daughter. We supported each other well. We had our families too, including my brother who was a NICU nurse, but it was hard to watch them with our baby. They were supposed to be celebrating the birth of their granddaughter and niece, not supporting us through trauma.
I guess all NICU parents have a shared but unique experience. Ours felt so strange. We were surrounded by tiny, skinny babies who were going to be there for weeks and months. Their parents were probably jealous of our chubby full-termer, while I found myself almost wishing that our girl had been premature as I felt that there were fewer unknowns with premature babies (although I know that’s not true).
After 72 hours our girl was slowly warmed up to normal body temperature and that night we had our first cuddle. NICU parents will understand this feeling.
When I held her skin-to-skin, our wee girl knew she was in the right place. She snuggled up and went to sleep, wires and tubes attached, for hours. It was only later that I realised I’d leaked all over my top.
Cuddles sorted, breastfeeding was next on the agenda and I was warned that this might take weeks to establish. I wasn’t bothered as plenty of women I knew had experienced difficulties. Our girl had been receiving my expressed milk through a naso-gastric tube and the plan was to slowly introduce sucking and breastfeeding. But she’d had a couple of nuzzles and I suspected that she knew what to do. I’ll never forget getting up for an early morning feed, her latching on with ease and sucking away.
I remember commenting to the closest nurse that I’d never done this before but it felt right.
She fed and fed and never went back to tube feeds. The responses of the specialists and nurses were obvious. In a ward where no-one wants to give any hint of optimism, their smiles said it all. Not all babies breastfeed easily, but a brain damaged one that won’t can be a cause for concern.
A couple of days later we were discharged with a feeding and growing baby. We were, however, carrying our experience. There was no prognosis, nothing to plan towards, no idea of what we would or wouldn’t be experiencing.
All we could do was wait and see.
This was partly due to a lack of outcome data as the cooling intervention was so new and partly because of the wonders of the human brain to grow, accommodate, change, and develop. But for us the unknown was hard.
We had nothing to grieve for, in limbo, we were waiting, waiting.
We had a beautiful baby to celebrate, love, and care for but it was difficult to embrace this wholeheartedly.
We would only know if our girl was going to reach milestones when she reached them. Or didn’t.
We had wonderful involvement from the paediatric team and at six weeks we were provided some reassurance that our girl was not showing signs of disability. As time went on, she sat up on cue, crawled a few months later than expected, and walked on target.
Talking and words were the same and slowly we started to believe that perhaps she might not have any issues.
She was discharged at her two year old checkup and the paediatrician wrote more about her nut allergy than anything else. I left the appointment with tears in my eyes, surprised that it still had such a profound impact on me.
For most parents, milestones are excitedly ticked off. Photos are taken and we all proudly note how quickly they’ve developed.
For parents of a child with disabilities, milestones are actually that, milestones.
When your child reaches them doesn’t matter so much – there will be great celebration anyway. They sat up! Who cares whether it was at six or 12 months.
I still have teary moments when our girl achieves something that we weren’t sure would ever be possible – writing words, pedalling a bike, being a demanding, caring, independent four-year-old…
Each milestone is important to all parents but they are so much more significant to some.
My daughter has become used to my happy tears and asks: “Did it make you so happy you cried?”
Starting school, learning to read, high school, first job, they will all hold so much significance for us.
Although we are theoretically in the clear, our experience left a mark and taught us so much. We had a window into the world of what it is like to have a child with a disability.
There is no comparison to the hard work and struggles that those parents experience, but we will never forget those months and years of the unknown.
And how nothing goes to plan.
Even in the early days I remember thinking that none of us have any idea what our children will become or what will happen to them. They might struggle with reading, develop an illness at eight years old, or become an insolent teenager who leaves home at 14. None of us know, and we are not forced to think about it. With a disablity from birth, you almost get a heads up.
As a bit of an epilogue, my placenta was analysed and found to have chorangiosis which basically meant that it had nothing left to give in second stage labour. Nothing my team could have done would have prevented this and my midwife’s decision that I could push our girl out almost definitely prevented her brain damage from being worse.
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The wonders of modern medicine meant our girl was cooled as promptly as possible and without this our lives would have undoubtedly been very different.
We have no idea of what the lies ahead; no-one does. But things have worked out pretty darn well so far and no matter what, we’ve got a beautiful girl to enjoy.
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