Survivor: Lucy

Lucy – Victoria 

 

15th March 2014

 

 

Our first child, Lucy, was born on March 15, 2014 by emergency caesarean section. We’d done everything right throughout the pregnancy; eating healthily, pregnancy vitamins, all the tests. Our care team assured us that the big surprise of the birth would be “is it a boy or a girl?”

 

We were thoroughly unprepared for the CDH diagnosis. Having had a long, rough labour, it was quite nerve-wracking, but also a relief, to be wheeled in to the operating theatre for the c-section. The baby’s heartrate had been dipping quite low for a long time, and I was worried about it’s health. Lucy’s “squawked” when she was born, and I relaxed. We were expecting a healthy baby, and once I heard her draw breath, I relaxed.

Denis was standing by ready to take pictures, but was pushed aside by what seemed like a flood of doctors and nurses. I caught sight of her huge dark eyes as they lifted her out of me, but after that we saw, and heard nothing. The staff were so focussed on getting her breathing well that they didn’t even tell us she was a girl.

 

The nurses were lovely, and said that Lucy was having “a little bit of trouble breathing,” and that they were going to take her to Special Care Nursery to give her some help. Looking back, I know now that they knew something was very wrong. But it was all calm in theatre, so we weren’t overly concerned.

 

The three of us were split up; Denis was put in a dark room somewhere between theatre and SCN, and I was in recovery. After the longest one and a half hours, we were reunited in Special Care. I was wheeled in from recovery, flat on my back. I knew something was wrong, but nobody in recovery would tell me what. I saw Denis leaning over Lucy, crying. It was then that I realised just how serious things were. I could only see and touch her tiny toes; before I could even catch my breath, the paediatrician told us that Lucy had a Congenital Diaphragmatic Hernia. I went into shock, my body started shaking, and my mind went into disaster mode. My emotions shut down, and I just wanted facts and answers.

 

I imagined a little tummy bulge that would be easily corrected, with no problems. The doctors explained that Lucy’s hernia, on the right hand side of her chest, was associated with “less positive” outcomes. She had her liver, small intestines and large bowel in her chest cavity, where her right lung should have grown. Her heart was pushed over to the left, her oesophagus was half way to her armpit and she was struggling to be stabilised. Given all this, and that she was born with a raging infection after a long labour, she was given a 10% chance of survival – but only if. If she survived the transfer to the Royal Children’s Hospital, if she survived the night, if she survived corrective surgery – then she had that small chance. I asked them if she was going to die; devastatingly, they did not say no.

 

It took the NETS team hours to stabilise her enough for travel. They wheeled her up to see me in my room, where for the first time I saw her precious face. She looked so perfect, so I couldn’t understand how she could be so deathly ill. She wasn’t expected to make it, so they let her stay longer with me in the room than they’d allowed for on the incubator’s battery packs. All up, about 5 minutes. Just 5 minutes to say hello and goodbye to our precious bundle, who we’d so patiently waited to welcome to the world.

 

Despite having been awake for more than 2 days without sleep, Denis had no choice but to drive up to Melbourne to follow her. After the most traumatic night of our lives, the 3 of us spent it separately: Lucy in NICU at the Royal Children’s Hospital, Denis on a couch in the reception of RCH, and me in Geelong Hospital.

 

Nobody gave me any updates, so I was completely in the dark until the next morning. It was only then that I knew that she was alive. Denis came back to Geelong and showed me some pictures of our little lady. She was the most beautiful baby I’d ever seen, even in an artificial coma and covered in tubes.

 

After her Saturday birth, I was finally allowed to be with her on the Monday. From then on, Denis and I sat by her cot living moment to moment, hoping that her body would start to stabilise. We were told that she would need corrective surgery to survive, but that she would need to be strong enough to survive the surgery. It was touch and go; the longer she went without surgery, the more her body weakened, but surgery before she was stable enough would surely kill her.

 

Multiple times in the first week we were prepared for the worst. We gave permission for blood transfusions and ECMO (extra-corporeal membrane oxygenation – basically heart-lung bypass). We were told that at one point, Lucy was about an hour from requiring ECMO (considered a last-gasp attempt at saving the baby’s life, but not without it’s own serious complications and risks). Thankfully, Lucy rallied (again) and on the Wednesday, the doctors decided that she was unlikely to get any stronger and operated on her hernia.

 

The day of her operation was probably the most difficult for me. Perhaps it was the regular post-birth hormone dip, perhaps it was the time it all became real. I’m not sure what it was, but I have very few clear memories of those early days and weeks, but I remember crying as we had Lucy blessed by the RCH Chaplain before her surgery. We weren’t able to arrange a Christening quickly enough, and the Chaplain kindly came to pray over her. I clung to Denis and sobbed; I didn’t participate in the prayers because I couldn’t. I didn’t want to acknowledge that our baby girl might die, that we were having this ceremony because she might not live to be baptised.

At any one time, there are about 120 medical professionals involved in a newborn CDH baby’s care. They are so unstable and require such a high-level of life support that the surgery took place in Lucy’s hospital room, as a transfer to theatre was too risky. Lucy’s surgeon, Mr Nightingale, was able to close the hole without a patch, which was positive, considering the large size of her hernia and the organs involved. We were warned that the “hard bit” was to come; the 24-hour post-surgery period would be critical for her survival.

 

Paralysed, she had a central IV line, peripheral IV lines, nitric, a naso-gastric tube and high-frequency ventilation. She was unable to move, unable to respond and being kept alive by machines. Her body was not able to tolerate food, touch or movement. It was completely shocking to be new parents unable to touch, hold and console our sick baby. It really gets you at your core – it goes against nature to not be able to “fix” it, or at least try and comfort your child.

 

With medical options coming close to being maxed out, we were warned a couple of times that there were not a lot of options left, that she had to respond to this treatment, or that medicine. Lucy’s heart was still out of place and was straining, and she had sky-rocketing pulmonary blood pressure. Her heart rate was all over the place, and her respiration rates were problematic; she wasn’t able to clear carbon dioxide from her system, and wasn’t getting enough oxygen through her blood. She had no lung tissue on the herniated side, and on the “good” side, there wasn’t a full lung either.

 

She fought on, and got through that period, despite numerous “crashes”. Each crash saw our hearts in our mouths, wondering if ‘this’ was it. The baby in the room next door to Lucy passed away. I hadn’t met him, or spoken to his family, but watched his progress each day. When we realised what was happening, I sobbed. It was so real – the babies in here can die. And seemingly without warning. How could we ever prepare for that? Each day, we sat by Lucy’s bedside, praying, bargaining, wishing and hoping for her survival. I felt so guilty – there’s no way I wanted to swap places with that family, but how was it fair that our child was still here?

 

Slowly Lucy began to strengthen. At 8 days of age, doctors reduced some of her sedation and she opened her eyes for the first time. Before this, we’d been continually prepared by the medical staff that she could “go either way.” Those little eyes connecting with us seemed to say that everything would be OK. Over the next two weeks, her various support systems were lessened and weaned. Like most CDH babies she faced a number of hurdles, and more often than not it was a case of ‘two steps forward, one step back.’

 

She was about three weeks old before we became more certain that she would survive – the longest three weeks of our lives. At three weeks, we moved to the NICU’s high dependency area. Each milestone was so exhilarating; when she was weaned off the nitric, when they weaned the morphine & midazolam; going onto conventional ventilation; being transferred to a regular cot instead of the resus bed; when the nitric machine was removed from the room… All tiny steps towards home.

 

It was slow going, but after 4 weeks in the Royal Children’s Hospital, Lucy was considered well enough to transfer back to Geelong Hospital. Ideally, she would have spent longer at RCH, but we were told that spots at Geelong’s SCN were hard to come by. We didn’t care – as far as we were concerned, being at Geelong Hospital was almost as good as being home.

 

She spent a further fortnight at Geelong Hospital, trying to learn to breastfeed. Our little superstar had overcome so many hurdles, but it turned out that the breathing, sucking and swallowing required for breastfeeding was not going to happen. At the same time, Lucy began to bleed internally; she pulsed blood from her bottom for quite a while before they realised that she was developing a severe cow’s milk protein allergy, and beginning to show the signs of significant reflux.

 

When we finally got to take our precious bundle home, I didn’t know how I’d cope without all the machines and monitoring. CDH babies often look quite well, so I had come to rely on her monitors to tell me what was really going on. With a myriad of follow-ups to juggle in Melbourne and Geelong (neonatologist, gastroenterologist, cardiologist, audiologist, paediatrician, GP, maternal & child health nurse, special care nurses), we really didn’t have a chance to relax and enjoy our baby. Not only that, but she required between 20 – 30 separate doses of medicines each day. Heart medicine, tummy medicine, medicines to combat the impact of other medicines. Special formula, expensive anti-colic, slow-drip bottle nipples. Nothing was simple, but she was home.

 

We took Lucy home just shy of her 7-week birthday. For a couple of months, Lucy didn’t do a great deal. She was clearly still a sick little baby. Then, some time before she turned 6 months old, everything changed. She was finally receiving medication for her reflux; her heart and lungs were recovering well. All in a rush, things happened. She became more settled, started to eat more, sleep better, interact with the world. She took to rolling like a gymnast, and at 10-months started walking. Look out, world!

Although Lucy still has trouble with her gastrointestinal system, and will likely face further tummy surgery, she is happy, healthy and developing well. Her lungs aren’t quite right, but it doesn’t hold her back. Lucy quickly showed us that she is fiercely independent and determined, and has a wicked sense of humour! She loves to sing and dance, and tell jokes (actually, I think she just likes making us al laugh!)

 

She has taught us so many positive lessons in her short life, and has faced more adversity than most adults. She’s an inspiration, and a delight. Hopefully she’s passed the worst that she has to fight in this world; this is only the beginning for our fighter – she’s here for a reason, and we can’t wait to see what she does with the rest of her life.

 

CDH Australia came into our lives when we were still at RCH. Their kind and supportive volunteers introduced us to other families who have gone through the CDH journey. Our CDHA friends are now part of our extended family, and have helped us through some very tough times.

 

There’s not enough words to adequately express our gratitude towards family, friends, the online community and medical staff who have all played their part in getting us through this challenging period. It’s not something we’d like to relive, but, as the old cliché says, we’re stronger for the adversity we’ve faced.