Labour happened pretty quickly for me. One minute I was out boating, pulling people around on wakeboards (I was having cramps but they can go on for days right?!) and the next thing I know I’m in hospital hooked up to a heart rate monitor with straps around my belly making sure the baby was ok and definitely on his way… It was a bit of bleeding at home that told me I needed to go to the hospital and check that everything was ok - I was scared as I hadn’t felt him move so hearing his heart beating, a really strong one, was music to my ears. High blood pressure rendered me unable to go back home so there I was, staying in hospital until master Lewis decided to make his grand entrance into the world. The high blood pressure meant that the doctor didn’t want a long labour to put our wee man under any undue stress or risk, so I was given an induction gel at around 6pm on Saturday afternoon, the 5th January. It was just days after my 35th birthday. I knew we’d be celebrating together from now on. A quick examination suggested that things were moving very very slowly and I was told to get some rest and the doctor informed me he’d be back in the morning, likely to give me another gel. He went on to say that he’d given me a very low dose of the gel as he didn’t want things to move too quickly and again, cause the baby any stress. Little did he know how our little man operated…
Rich stuck around for a bit before heading home to get some dinner and some sleep while I messaged some friends saying how boring and uneventful labour was… I got myself settled in the maternity ward, had a shower and even washed and blowdried my hair (which was still salty from boating that morning!) and lay down on the bed. The next time I was hooked up to the heart rate monitor, things began to change. The cramps were still coming around every 5 minutes but they were definitely getting stronger. Lying down was no longer comfortable and I was longing to get the belly straps off and be able to move around. There was no WAY I was getting any rest! The midwife offered me some panadol which I gladly accepted and remember thinking “how pathetic am I?! I’m not even in labour yet and this is PAINFULL!” I also remember thinking that it was going to be a bloody long night.
At around 10pm, Janelle (a close friend and paediatric nurse who was serendipitously working a night shift at the hospital) popped down to see me - just as the midwife was stabbing a shot of pethadine into my ass. She agreed to sit with me and chat while the drugs kicked in, when, as everyone kept telling me, I would be able to get some rest. The pain was starting to get seriously real and the pethadine wasn’t even touching the sides. I was pacing the room, breathing heavily and trying to do everything I could to distract myself but it wasn’t helping. I needed help. I needed something stronger. Janelle had to go back to work as the midwife checked me again - still 2 cms. I wasn’t making any progress. So why did it hurt so much? I remember at one point asking the midwife who said “because you’re in labour darling.” Oh right. Got it. Time to toughen up…or at least try!
The only other thing I was able to have was gas and air - as I wasn’t in advanced labour yet an epidural wasn’t an option. By this point I was screaming and doing everything I possibly could to escape my own body. I asked if I should call my husband, who was at home in bed, but it seemed pointless - one of us may as well get some rest and if this is going to go on for a while! Janelle came to see me again and rubbed by back until finally, around midnight I was offered an epidural. By the time the anaesthetist arrived (who is the fairy godmother of labour by the way - I LOVE her) and managed to hold me still enough to get the drugs in I was delirious but so, SO grateful for the sweet relief - it was almost 2am by the time they kicked in and the midwife checked me again…Go time! 9.5cms - Janelle called Rich who drove to the hospital at the speed of light and arrived minutes before the doctor. My waters hadn’t burst so he dealt with that and then it was time to push - just 30 minutes later our little boy had arrived.
I remember asking “is he ok? Is he ok?” And Rich, crying, telling me that he was perfect. Through his tears I could feel the pride pouring out of him. For me, for our little man and for our family. I’d done it.
A slimy little human was handed to me and I placed him on my chest - our son. Rich cut the chord and we marvelled at the human we’d made. He wriggled and cried in my arms as I comforted him and welcomed him into our lives. Rich kept saying “well done”. We looked at each other and agreed: Leo.
The doctors took him from me for a minute to wrap him in a towel before giving him back for some more cuddles. I don’t remember a lot of what happened next but I know we lay there for a while, I drank a hot chocolate and we took a lot of pictures of the new member of our family. Then it was time to check his vitals and stats while I had a shower and moved back to our room in the maternity ward.
It was 5am before I climbed into bed and got an hours sleep while Leo snoozed next to the midwifes and Janelle. At 7am he was wheeled back in to my room so that I could try and feed him and start our first full day in the world together.
Rich arrived back at the hospital around 9 am with a coffee - in a coffee mug that said “The adventure begins” on the side. Ironic now when you think about it. We shared cuddles with Leo all morning while midwives came to check on him and helped us try to feed him. The doctor came back to check on him and then friends arrived for some cuddles and after all that fuss we put him back in his little basinet when they left to give him some time to relax. Oh how I wish I’d held him every minute of that day. The midwives told us not to overdo it with too many visitors and I wish I’d had them all! In the afternoon Jenn and Nate popped in and took some photos of the three of us that I will treasure forever for that day we were truly blessed. We were so in love with our little man. The midwives loved him too and commented on how strong he was when they changed him. We were proud as punch. He hadn’t cried since his initial shrieks after birth but we were sure he was going to find his lungs soon.
Breastfeeding wasn’t going that well so we fed him an ounce of formula from a cup which he lapped like a little kitten. I’d heard friends had to do this with their newborns so I wasn’t concerned and I was messaging Rich, who had gone to grab us some take out for dinner, that he was just buggered from having a big day - he was less than a day old after all! Then it was just the three of us again and we celebrated with pizza and Prosecco in my room with Leo sleeping by our side. The happiest people in the world, we were on cloud nine. Rich left us that evening to go and celebrate with the boys.
The next morning I enjoyed some Mum cuddles while Dad had a lie in (and shook off his hangover) before bringing us coffee and breakfast. We had another visit from the doctor who was a little concerned about some of his features and his “weakness” which we struggled to believe… there couldn’t possible be anything wrong with our gorgeous son! The orthopaedic surgeon checked his postional talipes (crooked feet) and said they just needed a bit of physiotherapy and would be fine. Then another doctor came to asses him and agreed that he did seem a bit weak but it was unlikely to be anything serious - they just needed to run a few tests to make sure. She also recommended having his tongue tie cut which is hugely common in the UK and again, no cause for major concern. They couldn’t really figure out why he wasn’t crying but it just didn’t occur to us that anything was seriously wrong. Rich took a photo for his passport and headed out to register Leo’s birth and get his birth certificate.
Friends popped in throughout the day to meet Leo with flowers and balloons. We tried feeding him again after they left and he wasn’t really loving it so the midwife took him to try a little bottle. Rich arrived with more takeout for dinner just as the midwife came back in to chat to us. And that’s when the world turned upside down.
She said she was concerned that he wasn’t eating and would be taking him into NICU. He wasn’t with us at that point and in between all the visitors I’d barely held him all afternoon. We started to cry and told the midwife that we were upset - what was happening? We were in shock and had no idea what was going on. She had tears in her eyes and said she was sorry but they had to make sure he had some food. My burrito sat on the side in its wrapper. I felt sick to my stomach. Was there something really wrong with my baby?
They asked if I wanted to take him to NICU. Of course I wanted to take him! But where? Where was he right now? Sobbing I ventured out into the ward and found my beautiful son in his little crib. I can’t even remember if I took him back to our room for a while or whether I had to take him straight into the NICU ward. Once we got there, the nurse explained where to wash our hands and that Rich had to wear a hospital gown over his clothes. It was so routine. So simple. But I couldn’t process what was happening. I was in a fog. Can I sit with him? Can I hold him? We didn’t think to ask those questions out loud, they just rattled around in my sobbing head. The nurse sat back down behind her computer so we left Leo there and walked back to my room, without our son, and just wept. We felt so utterly helpless. We didn’t understand what NICU meant, or have any idea what was wrong with him. But he wasn’t with us and that was wrong. I was shaking, panicking and lonely. And that was just the start of a very, very long and terrifying night.
The doctor came back and told us that they would do a head and spine ultrasound the next day and start getting some answers. They wouldn’t discharge me that night because of my high blood pressure and Rich couldn’t stay - so there I was alone on the ward while Rich went home to an empty house…being separated was absolutely horrific and of course neither of us slept. We messaged constantly throughout the night:
M: The head scan and everything else according to the notes is really just ruling out any major issues that aren’t obvious to the naked eye. Essentially they’re just double checking that the dimple in his back isn’t something that goes right through his spine. But it should tell us whether the brain has developed properly. And the midwife was saying she had a really good look when they had him last night after he was born and the doc didn’t see anything obvious…so this is just what they need to do - until he feeds and starts being more animated they have to work on ruling things out.
Given he’s waving his arms and legs around.... you’d think spinal issues are unlikely (he wouldn’t be able to move them)
I managed to pump 15 ml and take it to him. He was fed and sleeping in his crib.
Are you ok?
R: I’m not ok. I’m so sad. I want to be stronger but I’m just not. I’m scared. You are amazing and I love you so much.
M: I’m scared too. But we also might be worrying about nothing. I don’t know whether I’m more stressed about the feet, his spine or the fact that he’s asleep all the time...
R: I’m ok about feet. That will come right. It’s his spine and sleeping that concerns me.
M: And I’m clinging to the fact that the orthopedic surgeon had zero concerns about his feet. We should try and get some sleep - tomorrow will be a big day. I know we are fighters so we’ll be fine. Leo is a legend. He’s got this.
Just been to see him. He had what I expressed plus a bit from a cup plus a bit from the tube. 1:30 is when he feeds again so I’ll pump again at 1 and then go and see him. I asked the nurse what she thought and she said it was difficult to say but he could just be lazy. I asked if that was common and she said “yes. Especially for boys!”
1am: I expressed some more and took it to him.
R: Any more awake?
M: No. I tried to speak to the nurse but she said that if he was only born yesterday she wouldn’t blame him for being tired…She just keeps telling me that we won’t know anything until the test results come back and there’s no point in stressing because it won’t help. I asked if she’d seen similar babies and she just said “once in a while”
5am: He’s taken teeny tiny amounts from the bottle and had two feeds from the tube. I expressed again at 4. The scary questions are: why doesn’t he have a suck reflex (hopefully just tongue tie and nothing more serious). Why is he so asleep - is he just lazy or does he have major brain issues? Feet and spine - hopefully nothing more serious than a common deformity? So now I’m actually more scared about the sucking reflex and lack of crying...
I don’t know what to think anymore
R: Me neither
M: I just spoke to nice midwife for a while. She said: she cannot tell us it’s all going to be ok but she has seen a few dimples and club feet in her time that have come back with absolutely nothing. She said he didn’t look like a super sick little boy. That made me feel better.
In the morning Leo started his blood tests and we arranged for his tongue tie to be snipped. It was difficult to admit but we started to tell family and some friends that Leo was having some issues and was in NICU while he learned to feed and started receiving messages of hope and encouragement from friends who had also had kids in NICU for a few days and gone home happy and healthy. My mum reminded me that I was also a sick baby and she too remembers crying over an empty crib at home, but a few weeks later I was discharged and she took her little miracle home. Everything would be ok.
Rich arrived back at the hospital and we prepared ourselves for a big day of “answers.” The doctor had to push hard for an ultrasound now that he was in NICU and we wheeled him off to get his spine and brain looked at. I was so scared watching the ultrasound and trying to asses what the doctors were thinking. They said the brain looked normal - no bleeds - but they didn’t say much about the spine.
We got back to NICU to chat to the doctor and she said that both ultrasounds were clear. Good news! His hearing test also came back clear. It felt like our boy was making progress.
The tongue tie helped as well - Leo stuck his tongue out immediately and started sucking on my finger. We were over the moon! He latched straight away as well but he’d just been fed through the tube so we were looking forward to his next feeding time later that afternoon - we were so full of hope!
Even though he didn’t breastfeed, he did take all of the next feed from a bottle. He was sleepy throughout and needed “assistance” with some of the milk being squirted into his mouth, but he took it and we were encouraged that he didn’t need the tube. We were trying to avoid the tube as we desperately wanted him to learn to suck. That’s all we thought he needed then he’d find the energy to wake up. Once he’d fed we could take him home….we’d be snuggled on the couch by the weekend - that’s what we were aiming for.
After another assisted bottle feed in the evening I was discharged from the hospital and Rich and I were free to go home. Home. Without my baby. Not how I’d pictured it at all and I was absolutely devastated. Rich was strong for me and as we left I told the nurse I’d be back for the 5am feed. I couldn’t believe I was leaving Leo there without me but I knew he was in safe hands and that I had to go - I needed some sleep and I needed to be with Rich. The 3 of us being separated the night before had broken us both and I couldn’t be in the lonely room in the maternity ward again, and being with Leo wasn’t an option. By the time we got home I was physically shaking and freezing cold. My body was starting to shut down. I managed to pump before passing out for a couple of hours before getting up to pump again. Then back to the hospital to feed Leo. I thought that after a night of rest and tube feeding he might have the energy to breast feed but it was to no avail. He was sleepier than ever and wouldn’t even really feed from the bottle. My heart sank but as I went into another room to pump I was still full of hope.
We’d asked another doctor for a second opinion and both paediatricians arrived at 7am to see if they could work out what was wrong with Leo. They compared notes and assessed Leo, checking his reflexes and discussing the fact that he seemed weak, and potentially floppier than previous days. They spoke in hushed tones and asked us a million questions about the pregnancy and how he’d been since birth. At some point, the nurse (who was new in that day) commented on the fact that his breathing had started to fluctuate dangerously. The doctors shelved their current discussion and agreed that it was concerning. They asked her to do a blood gas which Janelle explained was a blood test to see how much carbon dioxide was in his blood. Too much - our baby was struggling to breathe. They added a CPAP mask to him - continuous positive airflow pressure - to give him some extra oxygen. I still didn’t really think too much of it - he just needed a little help. I don’t really remember the exact timeline of what happened next as it all seemed to happen in fast forward - there was talk of an MRI and discussion of the fact that the MRI machine in the hospital, despite being state of the art, couldn’t be used with the breathing tubes, and whether it was worth risking taking Leo off for the test. In the meantime another blood gas was done. It was even worse. Leo needed to be placed on a ventilator to breathe for him. I didn’t occur to me that the ventilator was life support until I heard one of the doctors say it out loud over the phone. My baby was on life support. He wasn’t breathing on his own anymore. Shit shit shit shit shit. We asked the doctor to be frank with us. She told us that it was now obvious that Leo’s problems weren’t straight forward. At best we were facing a serious disability but we should be prepared for the fact that he might not make it. He might die. She told us we needed to get him on a plane to the Children’s hospital in Miami ASAP.
Our amazing doctors insisted that we be taken to Nicklaus Children’s hospital and called the head doctor who accepted Leo and said that they had a room for him. The medi-evac was ordered and as Rich rushed around the hospital and the island with friends who had come to help us to organise paperwork and passports, I sat in the next room trying to take it all in. We were leaving, hopefully that day, on an emergency plane with our son who as fighting for his life. We needed answers but it wasn’t looking good. We were told that we needed to go even if only to get a diagnosis. Was I going to Miami to watch my son die? My friends took the day off work to come and sit with us. I was staring to get used to sitting in a room while people stared at me. I tried to eat. I tried to explain to the people who had come to support and care for me what was happening and how I felt. I tried to make conversation. But I felt sick. I was also exhausted. I was cold but I was sweating. The girls were asking how I was doing with hormones and baby blues - I had no idea whether I was feeling them. What was hormones, what was stress and what was exhaustion? I just wanted Leo to be ok.
It’s amazing how hours of your life can just disappear in a hospital. Ask me to sit on a wooden chair for 12 hours straight without moving in any other situation and I’d say you’re out of your mind. But somehow sitting, waiting in a hospital was simple. The time on the clock ticked past as people came in and out with updates - passport sorted, just need a police clearance… that’s right, our 3 day old baby who had spent most of his life in intensive care needed to be checked for a criminal record before he could travel to the USA. Madness. I signed things, Rich rushed off to the passport office, the hospital referrals office, and wherever else he needed paperwork from. Friends kept tabs on the referrals team to see whether the plane had been scheduled. At some point in the afternoon we went home to pack our bags - we walked around our house trying to be quick but completely bemused as to what we might need. Nothing really fitted me as I had lost my bump but was only a few days post labour. The things that did fit me (pyjamas) badly needed a wash as I’d been wearing them for the last 3 days. I was expecting to be back home by now. I wasn’t prepared for life on a ward. No one is. I was also still pumping so I also needed nursing tops and bras. We threw a few random things into a bag and rushed back to the hospital.
We weren’t sure whether Rich would be able to come on the medi-evac. The planes are small and usually there’s only room for one parent and we decided that that would be me, but there was a chance that Rich would be able to fit too. In the event that he couldn’t, our friend Matt had agreed to fly with him so he wasn’t alone and they’d held seats on the 5:40pm flight - the last one of the day to Miami. It was down to the wire but at 4pm we heard that there wasn’t going to be space for both of us - he had to go. Saying goodbye to each other at that moment was one of the hardest goodbye’s of my life. We had no idea whether Leo was going to make it to Miami and Rich knew he could have been saying goodbye to his son. Friends stayed with me at the hospital and I broke down. I was absolutely terrified. I had no idea what to expect from the medi-evac and I was scared that Leo wouldn’t survive. But I knew I had to be strong for him - he needed me. I was a mother and an adult and I had to pull myself together and cope with this.
About 10 minutes later Rich walked back in - I figured he must have forgotten something but he said that the referrals team had called as he was in the car park on the way to the airport and told him he could go on the medi-evac after all. We both burst into tears of relief - glad that we were all back together and so much stronger as a team.
The wait was somehow easier then. We tried to get some rest before the medi-evac team arrived and a few bites of pizza. And then the movie show started.
At around 9pm the Life Flight crew arrived. The nurses had prepared us by telling us that the “transfer” could take an hour or two and to expect it to seem chaotic. The Life Flight nurses introduced themselves and got straight to work. They completed all of their assessments of Leo, took his vitals and confirmed that he was stable enough to make the journey. Eventually they turned to us to sign a waiver saying that we understood the risks associated with flying Leo to Miami . We sat back and let them take control of the NICU room and prepare their gear. After just over an hour they moved Leo into the incubator he was going to travel in - essentially a mini NICU. He looks so tiny closed in there with tubes and monitors attached to almost every part of his body. It was so difficult to not be able to touch him while he was in there. I was his Mum. I needed to cuddle him. The best we could do was speak to him through the plastic screen.
At around 11pm they were ready to go - they turned to us with a simple question - are you ready? We grabbed our bags, said some teary goodbyes to the midwives and walked behind Leo as he was wheeled out of the hospital and into an ambulance that was waiting outside. I felt like I was walking alongside by own body - watching my life from the sidelines as though it was a movie. Only it wasn’t. We were living it. We had 3 ambulances take us to the airport, one for Leo, one for us and one for support as the equipment carrying Leo was so heavy they needed as many people as they could to lift it in and out of the ambulance and plane. For good reason we were leaving the comfort of our homeland and all of our friends to a strange place we didn’t ever want to go to - it dawned on us as we left the hospital just how scared we both were…really scared.
We met the pilot who would be flying us to Miami - he was a cool guy but he had bad news, he was missing a piece of paperwork that US customs were demanding to let us land in Miami and was still waiting for clearance. The nurses weren’t amused and pointed out that they were running on air tanks and only had so many before they ran out and couldn’t support Leo’s breathing….they had 40 minutes emergency supply over and above the 1hr they needed to make the flight, and we were starting to eat into that. If we didn’t get clearance in the next 5 minutes, we’d be on our way back to the hospital…
I couldn’t face taking a backwards step but just as were loaded back into the ambulance, the pilot managed to pull a rabbit out of a hat and we were clear for take-off. Before that he’d said he was going to just take off and declare a medical emergency above Miami International airport which would close the runway to allow us to land! Now that would be arriving in style for our tiny 4 day old baby!
Finally we were wheels up and on our way. The nurses monitored Leo constantly on the plane, ensuring that he was stable throughout the flight and sending his vitals back to the hospital that was waiting to receive us. I called them the incredibles - the work they do is just so amazing and we knew Leo was getting the best care possible. Somehow we managed to fall asleep on the tiny bench seat we had behind Leo’s stretcher and just an hour later we touched down in Miami. It was freezing. Having left Cayman in my pyjamas bottoms and a vest top I was seriously close to asking the ambulance that was collecting us for a rescue blanket! We cleared customs in the private terminal and Leo was transferred from the plane and into the ambulance for the final leg of his transfer. What we didn’t realise then was that was the first and last time he would be in contact with the outside world. That’s as close as Leo came to feeling fresh air, even though he couldn’t breathe it in himself. The closest he came to seeing anything outside a hospital room.
We arrived at Nicklaus children’s hospital in the early hours of Thursday morning and were taken straight to NICU which felt like we’d arrived on the starship enterprise. Banks of screens with charts and graphs of all the babies lined the walls of the corridor as we walked through in front of a row of nurse stations before we turned down the hallway of what would become our home for the next 5 days - room 4028.
Leo had his own room and a nurse that was dedicated to his care 24/7. In his state of the art room there was a sofa bed and an ensuite bathroom so that Rich and I could stay with him. It felt so good to be all together - the first time we’d all slept in one place as a family.
We were introduced to Alexis, our nurse working the nightshift, and shown around - the family room where we could get water, coffee and hot chocolate and store our food in the fridge, including the labels we should use to mark what was ours. There was a procedure for washing your hands on entry to the NICU and rules regarding visitors and what you could and couldn’t bring into the treatment room. My head was spinning and I just wanted to get back to Leo.
Back in our room, consultants and nurses had already descended on our baby and a whole list of tests was underway - bloods, X-rays and ultrasounds which continued on until sunrise. We sat down with a doctor who asked us about Leo’s story from start to finish. The days were starting to blend into one and I remember being fuzzy about the details when trying to remember what happened on which day. The only thing we were sure of was that he was born a normal baby, and now here we were, in a state of the art facility having been transferred on a medical emergency with our precious son on life support. All of it had taken place in just 4 days and I hadn’t slept in 5. We were exhausted.
We set up the sofa bed, spread the blankets the hospital had provided for us and tried to get some sleep. First I had to pump - how I was still doing it I don’t know but I was clinging to the hope that my baby might need it one day. He was now on IV’s - they wanted to keep his stomach clear so that it didn’t obstruct his breathing - so he wasn’t even getting my milk anymore but I was told to keep pumping, that they would figure out what was wrong with him and then he’d need it. It felt futile but I kept doing it. It was the only thing I could do.
Finally I lay down to sleep for a couple of hours. Rich had crashed and was snoring so hard I was sure the nurses would pull the curtain in the room back any minute and tell us to shut up so they could concentrate! They didn’t and we managed to get some rest before the morning shift change and our new nurse arrived - Nicole the legend!
In the morning we also met the neurologist and geneticist (as well as physios, social workers, lactation specialists, occupational therapists and a constant stream of other people). We knew that the neurologist and geneticist would be key to understanding what was wrong with Leo. They mapped out their plan for assesing Leo and investigating his condition which they said could take weeks thanks for the turnaround times for genetics - it felt like we had a long road ahead of us.
By 11am we were still in our pyjamas and hadn’t eaten or drunk anything - with the continuous stream of consultants, doctors and nurses coming in to see Leo and talk to us it was impossible to leave and we didn’t want to miss anything. Finally we took a trip down to the lobby of the hospital to grab a Starbucks. There, outside the elevator, our friend Bea was waiting to meet her husband Bruno and their friend Leo before coming to find us. I couldn’t believe my eyes. I didn’t realise how much I needed to see a friendly face until I saw her and the fact that they’d just shown up, without an invite or warning, armed with fresh pastries and juices (we needed the vitamins!) was just incredible. One of my (many) fears leaving Cayman was that we were leaving the support network of our island family and going to a place that was big and unfamiliar. Seeing Bea made me realise that even in another country, in a city we didn’t live in, we weren’t alone.
We sat with our friends for a while before the Neurologist walked past and asked to speak to us. He was a cool guy and suggested that we could try some easy therapies to see if Leo responded. These treatments were a stab in the dark and a very long shot, but they would be an easy fix. There was a chance…a hope. We left our friends to head back to Leo and waited for the meds to kick in and make our baby better.
But they didn’t, and all too quickly that hope was extinguished as Leo failed to respond and all of the “easy fixes” were thrown out - it was starting to become increasingly obvious that Leo’s problems were complicated and severe. The neurologist confirmed that the next step for him was an MRI which would take place the next day and the geneticist ordered a spinal tap - a procedure we were asked to leave the room for.
Unexpectedly and unannounced later that day another friend, Kim, who used to live in Cayman stopped by to drop of a bag of treats, notepad, SIM card and the offer of a car should we need it - she had heard the news from a friend in Cayman and wanted to help - another angel on our side in this foreign land.
Later we took a walk and grabbed some lunch before heading back in to more test results, consultants and questions. The evening rolled around before we knew it and as the nurses prepared for their night shift change, we realised that nothing else significant would be happening in Leo’s treatment plan until the next morning. It had been a huge 24 hours of tests and consultations and now we needed to wait.
We decided to leave the hospital for a couple of hours and go out for a bite to eat. We were encouraged by the geneticist and neurologists thoroughness and we believed that they were going to find a disorder that we could treat and manage. We received messages from friends who knew of genetic metabolic disorders that were controlled by medication and allowed for a relatively normal life. We ordered burgers and Rich even had a beer. We were still hopeful.
But all of a sudden we realised what we’d actually done. We’d left our boy! How could we be so stupid?! What if something happened while we were out? He was in NICU and they said that he was stable but how did they know? This led us to asking ourselves what we would do if he stopped breathing. Would we want him to be resusitated? The days events had indicated that Leo was a very sick little boy and our main priority was to ensure that he wasn’t in pain and that he wasn’t suffering. If he wanted to fly away to the angels, we wouldn’t be the ones to stop him. But one thing was for sure - we needed to be with him.
Unsurprisingly our appetites disappeared and we hot footed it back to the hospital, desperate to see our son. We spoke to the nurses straight away and told them what we’d discussed and how we were feeling. They understood and told us that we were incredibly strong and selfless parents. So why did we feel so selfish? Didn’t they just hear me say that I wanted to let my son die if he stopped breathing? They said that what we were suggesting was strong and noble as we were putting our baby first. It didn’t feel like it. We’d never felt so low.
Having seen how upset we were, the nurses offered to let us hold Leo and we jumped at the chance for a cuddle - not a simple process! In came the nurses and respiratory therapists to hold Leo’s breathing tubes while he was transferred to our laps one at a time. Just 2 days earlier I’d been picking him up and snuggling with him in blissful ignorance and now it was all we could do to cradle him with a team of medical professionals and machines surrounding us. But it was magical. We cuddled him, held his little hand and spoke to him. We told him that we loved him as our tears fell onto his forehead. And then he was placed back into his crib, under the heat lamp, surrounded by warm pads to keep him cosy. He looked so snug and so relaxed. Our brave little man taking all of the proding, poking, monitoring and tubes in his stride.
We continued to chat about our options and what the next day might bring, until we couldn’t fight the exhaustion any longer. Our friends who had stopped by earlier had bought us toiletries and a duvet and pillows which made the bed so much more comfortable and we collapsed into it for a few hours. I remember how Rich and I fell asleep, cuddled so close together we could have easily fitted in a single bed. At home we have the luxury of a king and neither of us can fall asleep if we’re so much as touching fingers. We were shattered and just wanted to be close. We managed to sleep fairly well although I was still setting my alarm to pump and any time either of us got up in the night we would walk over and chat to Leo, make sure he was snug and comfortable and tell him we loved him.
We woke up before the nurses shift change in the morning - Nicole was with us again. Every day that we were in hospital we made a conscious effort to “start the day” by making the fold out bed back into a sofa, showering and making it feel like it was a new day, clean and fresh. We put plans in motion for our families to fly to Miami the next day and our friend Matt also told us that he was flying out that evening to be with us for the weekend.
The MRI was scheduled for 2:30pm and at around 11am the nurses removed the ECG cables and hat from Leo’s head - we could see his beautiful hair again! They washed his little head and I was able to brush his blonde locks. It was such a tender moment and one I will cherish forever. We called it “Nicole’s spa!” He smelled delicious and I loved caring for my little man and seeing his little curls. Soon he was ready and a new team of respiratory specialists came to accompany Nicole down to the MRI.
We knew we had around 3 hours until he’d be back so we went out to get some fresh air and some lunch. On the way we talked about what was potentially ahead of us if the MRI showed what we thought it might...we were on the same page. We couldn’t let our little boy suffer and we wanted a quality of life for us all. We got back to the hospital with time to spare but almost as soon as we’d sat down we got a call from the neurologist who wanted to speak to us. The MRI had only been going for 2 hours and it was supposed to take 3.
He came into the room with the geneticist. We could tell it wasn’t good news. The MRI showed that Leo was lacking a Corpus Collasum almost entirely. There was barely any connection between the left and right sides of his brain and firing within the brain was very slow. This correlated with a rare metabolic disorder called Nonketotic Hyperglycinemia (NKH) so the geneticist had gone to the lab to rush the results from the spinal tap. Leo’s glycine levels were at 300 - ridiculously high compared to the usual 25 - and she’d sent both the MRI and glycine levels to her colleague and friend in Denver, a leading researcher for the disorder, who had confirmed that Leo had classic NKH.
We had our diagnosis. NKH is terminal and Leo was a severe case. We knew what we had to do. The doctors said that they supported our decision and left the room.
It was then that we really broke down. We sobbed on our knees by the window of the NICU room. We phoned our parents and told them that they wouldn’t get to meet Leo. He had been through so much and it was time to set him free.
As he was wheeled back into the room I remember looking at my darling boy knowing the decision that we’d made about his life. I felt so guilty. We were going to let our son die.
We had a couple of hours while the doctors and nurses organised the relevant paperwork so we used the time to get some footprints and keepsakes - Rich cleaned up Leo’s poor little feet that had been pricked for blood tests so many times!
Matt arrived just in time. We were given some paperwork to sign - I couldn’t believe what I was doing. Then we prepared ourselves for the unthinkable. At 8pm Leo was taken out of his crib and we had some cuddles with the tubes in. He was riding the ventilator so no one thought it would take long once the breathing tube was removed.
After a few cuddles I turned to Rich and asked if he was ready. He nodded. At 8pm on Friday 11th January, 5 day after he was born, we removed Leo’s life support. We held him, cried tears of love and sadness onto his little body and told him how much we loved him and would miss him. We held him close as doctors watched the monitors and his vitals crashed.
And then they came back up again. Our boy was fighting for his life. We always knew that Leo had a strong heart and he wasn’t willing to give up just like that. He wanted more time with us.
It was so amazing to hold him without the machines and tubes but we didn’t really understand what was happening - he had been on life support and he wasn’t supposed to live without it. The doctor then told us that sometimes it takes minutes, sometimes hours and sometimes days. That’s not how it happens in the movies! It didn’t seem fathomable to us and we didn’t want it to take days - we needed the pain to end and it seemed like tearing off the plaster was the way for that to happen.
But that wasn’t Leo’s plan.
At 9pm Nicole said her goodbyes - she had been so amazing and we will be forever grateful to her to supporting us through two very difficult days of tests and diagnosis. She truly loved Leo and the care she gave him and us is unforgetable.
As the clock pressed closer to midnight it started to become clear that he wasn’t leaving us yet so we sat back with Leo cradled in our arms for another night in NICU. Dors stayed with us and we took it in turns to catch 40 winks while two of us stayed awake to keep each other company, watch Leo’s vitals and hang out with him. It was the first time that we were able to sleep with our baby in our arms. It was magical. I began to realise that Leo was giving us bonus time with him - his gift to us. My selfless, brave baby wanted some time with his Mum and Dad and I am so grateful to him for that. As he and Rich slept together I realised how similar they looked - Leo was a miniature version of his Dad. They looked so cute together as Leo purred in Rich’s protective arms and snuggled in closer.
As the morning rolled around and signalled the end of our “all-nighter” we decided to make some more memories. We got Leo’s passport out and took some more photos and enjoyed a lot more cuddles. We “started the day” again and wandered how much of it we’d get to spend with Leo. We also met our new nurse, Lisa.
At 10:30, some more friends from Cayman - Nev, JS, Kate and Nate - arrived having jumped on the morning flight from Cayman and it started to dawn on us that even our parents might make it in time to meet him. Friends and family that were coming to support us in our loss were getting the chance to meet our son and I was so happy! I wanted other people to see how beautiful he was and be a part of our story. Leo was giving us so much more than we ever expected from him by holding on.
In the afternoon our parents and Rich’s sister and my brother arrived. Leo was surrounded by so much love and his grandparents who were photographing him from every angle. There were a lot of tears but also so much joy as everyone cooed over our little man who was filling everyone with his gorgeous soul. The NICU rules for visitors had long gone out of the window once the diagnosis was confirmed and our room was alive with friends and family enjoying Leo.
Messages of love and support were pouring in from all over the world and people were sending pictures of candles burning for Leo.
As evening fell, we sent the family home to get some rest, apart from my brother, Jan who stayed with Kate and Nate to keep us company for the night. We now knew the drill - we needed people to stay awake and keep each other company to watch Leo’s stats while Rich and I tried to get a few minutes of sleep. In a weird way the all nighters were fun. We shared stories and joked and hung out with Leo - as we would have done had we taken him home as a newborn and visitors come round to see us. Perhaps not in the middle of the night but still! At 4am Kate and Nate swapped with JS and Nev as my brother tried to get some sleep in a chair. He refused to leave and I’ll always love him for it.
After a hectic day on Saturday with people arriving, meeting Leo and lots of cuddles, we wanted Sunday to be relaxed. We wanted Leo to be relaxed. So the focus was on storytelling and chilling with him. Rich’s mum and sister told him tales of his late Grandpa and life on their farm when they were growing up. We told him about his family and those waiting for him in heaven.
He was starting to lose his colour and feel colder and we knew it wouldn’t be too much longer. His heart rate started to plummet as the evening set in. Rich and I ran in an out of the shower keeping one eye on the monitor while the other one stayed right by his side. We ordered McDonalds and had a fast food picnic on the bed - we were exhausted and decided to get some sleep. If Leo decided to go that night we would be right next to him.
The nurse set an alarm on the monitor and said she would check on us regularly. The stats were dropping at a much faster rate than they had been but we eventually fell asleep for a few hours and by the morning we knew we were on the final stretch. I read Leo every Winnie the pooh story I could find online as well as some children books and we sang lullaby and songs - Lord of the dance being our favourite. Friends sent in recording of children’s books which we played to him.
And then the crashes started coming thick and fast. He was leaving us.
At 3:50pm on Monday 14th January he died in our arms and we said our final goodbyes. I’ll never ever forget that moment.
RIP our beautiful little Leo. We’ll love you forever.
Thank you to all of the amazing doctors, nurses, midwives, friends and colleagues who helped us and Leo at every step on our journey and continue to support us with the most incredible care we could ever hope of receiving. You know who you are - we love you all.