Eliza's Story

I hesitated to write this as it seemed self-indulgent and ‘woe is me’, plus in retrospect everything could have been a lot worse. I think hearing another family’s story would’ve helped me in those early weeks though and it has been a really cathartic exercise to write it all down, so here goes…

Excess fluid, a mistaken heart defect diagnosis at 20 weeks, living 10,000 miles from family and an absence of air conditioning in an Australian summer, combined to make my pregnancy with Eliza a tough one. But when she was born at 37 weeks by emergency c-section, we all fell in love with our raven-haired and red-lipped little girl, who brought a kind of symmetry to our family alongside her 4 year old brother.

During the first night in hospital I thought I heard her shivering so I added another blanket to the crib. It was a kind of faint panting noise. She was also bringing milk up through her nose and only sleeping for a few minutes at a time. The midwives dismissed it as mucous and we were discharged two days after she was born.

After a week of Eliza struggling to keep milk down and choking and thrashing about at every feed, I panicked when the area around her lips started turning blue. The GP was also concerned and sent us straight to A&E where they monitored her SATs and found them to be too low. Cue admittance to the children’s ward for a night and then a transfer to the children’s hospital where Eliza was put on tube feeds and saw doctors from every area of medicine known to man.

In retrospect I must have been operating on adrenaline – still sore and dosed-up on codeine from the c-section and severely sleep-deprived, I spent 10 nights on a fold-out bed in a noisy children’s ward, pumping milk every two hours, eating microwave soup and trying not to Google scary medical scenarios on my phone. Tim tried to squeeze in some hours at work between Luca’s Pre-school sessions and driving to and from the hospital. The ‘not knowing’ sent me into a kind of meltdown and I found myself pining for my Mum, who’d I’d lost to cancer a decade earlier and for the post baby moon that never was. I felt a long long way from anything familiar and safe.

As she’d passed all heart, lung and brain tests, the ENTs decided to take a better look under general anaesthetic. It took a lot longer for them to call us in to recovery than they’d originally said. While probing around, they had aggravated her larynx and she struggled to breathe when coming round, with SATs well below normal. My brand new baby was lying on a hospital bed with an oxygen mask, dosed up on steroids and I was completely helpless. I asked the stressed anaesthetist if prolonged low oxygen would mean brain damage and she said it was too early to tell – one of the worst moments of my life.

When everything (including me) had calmed down a bit, Eliza was taken to special care and the ENT Consultant showed us photos from the probe which just looked like a mass of pink jelly and declared it to be “good news” : a mild and common condition called Laryngomalacia (floppy larynx), combined with reflux. Tim asked the question I couldn’t get out of my mouth – could it kill her? The doc said no. (hers was a mild to moderate case). He explained that she’d grow out of it and we’d just have to learn to manage it with trial and error and daily omeprazole (a prescription anti-reflux drug).

We spent a few more days in the specialist newborn care ward while she was weaned off the tube feeds and back onto the breast, with the help of endless visits from lactation consultants and speech therapists (to help with suck-swallow coordination). A very upright position seemed to work best for her, although not for my back. My breasts had bigger audiences than the average glamour model and Eliza became famous as the biggest baby ever to be admitted to this ward of tiny little premmies.

Then we were sent home with an apnoea monitor and CPR training to carry on as normal and wait for her to grow out of this “mild and common condition”. Hmmmm….

What followed was a year of tears (many of them mine) vomit, screaming, thrashing, pacing and very little sleep. We went through dozens of muslins and varieties of cot wedges to keep her elevated. She practically lived in a baby carrier to keep her head higher than her stomach and we even spent a few thousand dollars on a Lazy Boy recliner (in easy-to-clean-milk-off leather) so I could sleep upright with her on my chest.

After a year of teetotal existence, I got drunk on her first birthday in both relief and celebration of surviving those 12 long months.

We now live back in the UK and Eliza is a beautiful 19-month-old Betty Boop lookalike, with a penchant for dancing, dogs and Daddy. She’s feisty though and has terrible and regular tantrums – I guess a year spent constantly regurgitating stomach acid will do that to a person. She doesn’t sleep particularly well and will often wake screaming, as if in a blind panic. She slept through her first full night at 15 months, on my 36^th birthday. She took to solids brilliantly (she was baby-led weaned at 6 months - maybe the heavy solids minimised reflux?) but is quite behind in speech, which I hear is common in LM babies.

Anyway, that’s our story so far – hope it brings some comfort to other LM families or at least raises awareness of this little-known, unpronounceable and basically bloody nasty condition. Breathe easy x

Written by LM Supermom: Vicky