NICU; when you hear this word you don’t realise what it means, unless you or somebody close to you has lived it.
Baby Lucia took us three long years of trying. My husband Thierry, now 55, and I met when I was 28, and neither of us particularly wanted to get married or have children, but we soon saw how things could change. Fast-forward a year and we were married; we’d realised we were soulmates and we both knew we wanted to create a little human, someone who would be part of both of us. By the time I finally fell pregnant, we were both desperate for a baby.
When I first discovered I was pregnant, I was a little scared; Thierry has children from a previous marriage, but for me, everything was new. Happily the first few weeks of my pregnancy were a breeze. I had no sickness, no discomfort, I could still exercise. I began creating my own calendar with a picture for every month that passed.
I wanted to know from the start if I was having a boy or a girl. Thierry didn’t care, as long as our baby was healthy. We discovered we were expecting a baby girl. Towards the 25-week mark the Dubai summer began to confine me indoors, so I began a project; I bought a second-hand sewing machine and started creating things for my daughter. I made soft toys, a large play mat, some bibs; I wanted her to have everything personalised and made for her by her mother.
All the preparations, the baby room Thierry and I decorated, the toys and play mats and bibs I made… Lucia didn’t get to use any of those.
Thierry and I prepared for her arrival. We decorated what had been our guest room as her nursery, with a sun on the ceiling and glow-in-the-dark stars for night-time, and we painted huge artworks for her room.
At a check-up around this time, my obstetrician told me our baby didn’t have enough amniotic fluid in my womb. I wasn’t too worried; I drank even more water, and on our next visit everything was fine.
I had another appointment at just past 29 weeks and again, everything was fine. But the next morning, without warning, I woke up to find I was losing fluid. I’d read online that many women experience the same thing, so again I wasn’t too worried. Later that morning, though, when I stood up to get out of bed, I felt liquid leaking again. Thierry was still sleeping. Just in case, I sent my doctor a message to ask her advice.
She told me to go straight to the emergency room, so I woke Thierry and we rushed to the hospital, the facility we’d chosen for our delivery and where we were meant to start antenatal classes in 15 days.
Doctors in the emergency room confirmed I was indeed leaking amniotic fluid, but they monitored our baby and she seemed fine. They said I’d need to stay in hospital so they could run some more tests, and that I’d need bed rest when I got home.
I wasn’t scared; in fact, I was so relaxed, I sent Thierry home to get some rest. But everything changed at 6am the next day. The monitor keeping track of our baby indicated she was in distress, and the nurses told me she’d need to be delivered straight away. Finally, I began to panic.
Thierry didn’t answer his phone. My parents were in the States, my brother was in France… I felt utterly alone. But I didn’t have a chance to feel like this for long, as I was being rushed to the operating theatre – still on the phone, frantically trying to get in touch with my parents to get them to keep calling Thierry. A million other things were going through my head. My baby wasn’t ready to be delivered! It was too soon; would she make it? Was she even still moving in there? Where were the nurses telling me to go? What was I meant to be doing?
When I was being wheeled into the OT, it was 6.15 in the morning and I was 29 weeks and four days pregnant. That moment is going to be etched in my mind forever. Doctors took five attempts to get an epidural into my spine. I didn’t feel a thing. I was already in premature-mum mode, without even knowing it; my baby came first, and I didn’t care about anything that happened to me. Pain didn’t matter, nothing mattered. I just needed the doctors to save her.
Finally the epidural was in place and the surgeon came in. Only minutes later my baby was out; I felt tugging as she was pulled from me, then nothing. I stared at the corner of the room where I knew doctors were with her and I waited for her to cry. Three minutes – that felt like three hours – later, she cried. But of course, she was rushed off to NICU. I was left in theatre, not even having seen my baby daughter. It felt unreal.
Despite the mad panic and Lucia’s emergency delivery, doctors reassured me she was fine. I shouldn’t panic; she had cried, and she was alive, and – as Thierry had arrived – her dad was with her. So although I was desperate to see her and to touch her, there was little else I could do but allow myself to be wheeled back to my room to rest.
As soon as I was back in the room, I began frantically sending messages to my worried family and waited for Thierry to come and tell me how Lucia was doing. It’s all a blur now, and I can’t remember if he looked worried, but I recall him telling me she was beautiful but tiny. That he hadn’t been able to touch her, as she was in an incubator with goggles and tubes. But he was absolutely sure she was OK. She’d weighed 1.5kg, which was huge for a premature baby of her gestation.
Around 2pm, doctors told me I could see Lucia as soon as I felt better. They looked surprised when I told them: ‘now’. I’d only had the C-section early that morning, but I couldn’t wait.
Beeping machines, alarms, and an odd silence within that world – that was life in NICU, the traumatic life my little girl and I lived for weeks.
I was wheeled into NICU to see my beautiful baby daughter and that’s when I first felt real fear. I couldn’t hold her, I couldn’t touch her, the pain from the surgery was increasing, hormones were kicking in… I broke down and sobbed for my baby girl. The incubator was surrounded by all these crazy machines, beeping and blinking, alarms going off everywhere and nobody to explain what they were. Should you panic or not? There were other babies in incubators, other mums sitting with them, but nobody was talking to each other. It was a silent world within a world, with only the noise of the beeps and alarms. Again, I felt totally and utterly alone.
My beautiful baby girl was a little astronaut. She had a blue light over her – luminotherapy, they called it – for jaundice, and had IV tubes in her arm and goggles to protect her eyes.
When you’re going through those first few hours in NICU, you don’t realise you’re already grieving. Grieving your perfect, normal baby; grieving the joys of antenatal classes; grieving the joy of having your baby in your arms. But those thoughts come later.
After an hour of sitting with Lucia, the pain from the surgery became too much to bear and I had to go back to my room. I desperately needed to do something useful, something to help my daughter. I asked about breastfeeding, and learned about expressing milk manually so she could be fed those precious few drops of colostrum by syringe.
Nurses had told me the sooner I walked the better for my recovery, so just two hours later I was up on my feet and walking – or rather, wobbling – back to NICU. Nurses soon began to refer to me as ‘the mum who didn’t look like she’d had a section’.
I was over the moon when eight hours after Lucia was born nurses told me I could touch my daughter. She finally felt real. I was still worried, but I was relieved; Lucia was alive, and she was being well taken care of. That’s what mattered the most.
I took a moment to look around the NICU. It appeared very well equipped, and the nurses seemed to know exactly what they were doing; very professional, but gentle at the same time. I’d find out later, from asking for second opinions abroad, they were doing everything perfectly.
I spent the rest of the afternoon walking backwards and forwards between my hospital bed and NICU, laughing at the nurses’ faces each time they saw me wobble past. Thierry stayed until 6pm, then quickly dashed home to pack up some essentials. Of course, we hadn’t even packed a hospital bag so we had nothing ready. When he returned I finally got to change into pyjamas and look slightly more decent for my wanders through the hospital. I went to see Lucia at every chance I got, with the nurses chasing me and telling me I needed to rest. We saw the neonatologist at 8am the next day. He said Lucia would have to have a range of tests to check if everything was fine, and she’d need to stay in NICU for around eight weeks. We were still scared, but we were reassured everything would be OK. How presumptuous of us.
Two short days later, after X-rays and an ultrasound, we discovered Lucia had a grade 4 intra-ventricular haemorrhage (IVH), or a bleed in her brain. Grade 4 is the most serious of all brain bleeds. Doctors tried to comfort us, telling us that with babies’ brains there was no way of knowing if IVHs would resolve themselves, and we just had to wait and see what degree of neurological damage our daughter might have.
I carried on with my mission, the one thing I could do to help; I pumped milk for my daughter. Every three hours, while I spent my days sitting by Lucia’s incubator. And I began writing down all the data I could find. Temperature of the incubator, level of the vent, weight decrease or increase, growth, medicines, everything.
Five days after Lucia was born, I was discharged from hospital. Going home without her was an absolute nightmare; I almost felt as though I hadn’t had a baby. I still needed to pump every three hours, I still needed my C-section wound cleaned and dressed, but I didn’t have a baby to take care of. So I decided to try and do something useful. Nurses had told us we could bring covers to put on top of the incubator and linens for inside, but we’d need to label them so they didn’t get lost. So out came the sewing machine and I stitched Lucia’s name on every linen I’d bought.
The next few days were pure hell. Instead of resolving itself, the bleed on Lucia’s brain worsened, destroying her brain cells. She began having seizures, developed an infection – meningitis – and was moved to an isolation room for a week.
Life in NICU is like a bubble, a time warp. You put your life to one side and go in every single day from 8.30am to 6.30pm. My mum arrived to support me, which was a tremendous help as Thierry had to go back to work soon after Lucia was born.
She lived for only 51 days, but somehow I knew I needed to help Lucia make her mark on the world. That thought helped me carry on.
When Lucia returned from isolation, doctors were very realistic. Had she been delivered in France, they would have helped let her go; she was in pain, and on the severity spectrum of neurological damage she was considered a worst-case scenario with no motor or neurological skills. We were simply devastated. All we could do was be there for her. Gently change her diaper every two hours, hold the syringe with milk above her head as she was fed by a tube. I got to hold my daughter – skin to skin – for just one hour, 10 times during the 51 days she was in NICU. Those were the most magical moments of my life; at last, I felt like a mother.
We knew for 20 days before Lucia died that it was going to happen and that was sheer torture. It was the single most inhumane feeling we have ever experienced. We knew she was going to die yet she was still there, looking at us, growing every day in front of us. She had been in pain most of her cruelly short life and we, her parents, had not been able to help her.
Our baby girl Lucia’s tiny, tiny body finally gave up the fight at 7pm on November 15, 2015. Her brain bleed had simply been too severe, the damage simply too extensive, for her to survive. To say we were heartbroken is just inadequate.
Coming home without her was horrific. Coming home to her room was horrific. We felt empty. I had a scar reminding me, every time I saw it, we had lost our baby. For a few days, I stayed in my pyjamas and watched endless episodes of box sets. But a week after she died, I realised I needed Lucia’s life to matter. She only lived for 51 days, but I needed her to make her mark on the world. This realisation got me up out of bed and active again.
I decided I’d use my experience to help other mums going through the hell that is NICU, in the way I’d so badly needed to be helped; I began writing a guide to NICU (visit nicudubai.com). It was unbearably hard to write, but knowing I’d be helping other parents kept me going. I guess you could call it my own personal therapy. Helping others had got me through the darkest days in NICU, and it got me through Lucia’s death.
My only advice to parents living our tragedy is to find something to do to take your mind off your loss. Find a project, find a purpose. Even with this, the pain will never go away; it hits me often, and it’s hard to do certain things now – going to malls and seeing pregnant women or mums with strollers, or walking past shops with baby clothes. Pain is an everyday part of my life, but I’m getting there slowly. I won’t ever be the same and Lucia will never be forgotten.
Around a month after Lucia was born, doctors told me I had a lazy cervix and that was likely why I began leaking amniotic fluid, resulting in Lucia becoming distressed and having to be born so early. We don’t know why this wasn’t discovered beforehand. But now that we know, Thierry and I want to try for another baby. Yes, we’ll be scared, but we know there’s a perfectly safe procedure – a cervical stitch – that can be performed at 13 weeks that should mean we’ll get to full term and deliver normally. We’re hopeful we will be parents again soon.
When Lucia was cremated in France, she left no ashes; she had been too tiny. But her impact on the world, through our guide to NICU, will be far greater. Her little life wasn’t in vain.