My husband and I married on August 22, 2015 in Nova Scotia, Canada. We were deeply in love, ready to take whatever life threw at us. When I became pregnant a couple of months later, the world seemed perfect. We held hands as we went for the 20-week scan, paying C$10 for the first picture of our precious baby.
Just a week later we were told to go to a larger hospital in Halifax for more images to be taken. They were sure it was nothing, but we had to go immediately. We booked time off work, drove the three-and-a-half hours there, and were seen immediately at the high-risk pregnancy clinic.
I heard the words that still haunt my dreams: “There is something very wrong with your baby’s heart”
It didn’t take long for the technician carrying out the new scan to run for a doctor. And then I heard the words that still haunt my dreams: “There is something very wrong with your baby’s heart.”
I remember it was a Friday evening. We had to wait in a small family conference room while the technician tried to find everyone who needed to be part of the discussions that would come. We became very familiar with those rooms and I dread them now; good news never comes from these places.
The scans showed our daughter had a severe form of hypoplastic left heart syndrome – she only had half a heart. She was safe in my womb, but once she was born she’d need a three-stage surgery – the Norwood, Glenn and Fontan procedures – to have any chance of survival. The first would take place just days after her birth.
I sobbed, dissolving into my husband’s arms. We both put our hands on my stomach, feeling our baby moving. He cried too, one of the rare occasions I’ve seen him overcome by emotion.
Not for the last time, we were asked if we wanted to continue with the pregnancy. I didn’t understand the question: why would we want to stop fighting for our daughter?
We were sent home to wait, to see how our baby grew and developed. Every other week, and then every week, we made the journey to the children’s hospital. We were told a hole in our baby’s heart, one she desperately needed to survive, was closing. This meant her chance of living was greatly reduced.
Not for the last time, we were asked if we wanted to continue with the pregnancy. I didn’t understand the question
Our doctor looked so sad and disappointed when she gave us the news, but again I didn’t understand. I was sure that with our love and combined brilliance of the doctors and surgeons, our daughter would be saved.
Maybe it was my determination that led the doctor to contact a paediatric cardiologist in Toronto. He offered us an elective procedure, a foetal intervention. A very small stent would be inserted into our daughter’s heart while she was still safely tucked away.
But because I was in the 28th week of pregnancy, it had to be done straight away. Again, it was a Friday night. We bought plane tickets for Toronto, packed our bags for the 1,000 mile flight, and were in the paediatric cardiologist’s office by Monday.
I was told to stay very still, half-naked and terrified in an operating theatre packed with people
My husband held my hand as I went into the pre-op appointment. The risk to our baby was enormous; this procedure had only been successful a handful of times.
They anaesthetised her through the umbilical cord, moving quickly once she was in the necessary position. I was told to stay very still, half-naked and terrified in an operating theatre packed with people. It felt as though every doctor in the hospital had come to see this rare procedure. As I sobbed, one of the doctors held my hand and told me I was being very brave.
They threaded the stent through a small needle and used ultrasound to find the hole in our daughter’s heart. Once it was over, we stayed at the Hilton Doubletree Hotel in Toronto to wait and see if she’d make it to full term.
She made it to 37 weeks. Millie Grace Robertson was born on December 23, 2016 at Mount Sinai Hospital in Toronto. She weighed 5lb 4oz and was utterly beautiful. We held her, the only time we’d see our baby unscarred and perfect. But the doctors realised something was wrong; Millie was rushed to the cardiac critical care unit at the Hospital for Sick Children, also in Toronto, and I was left behind.
She’d outgrown her stent, which was now restricting blood flow, and needed emergency surgery. This would be the first of ten open-heart and five catheter procedures our brave Millie would endure.
We spent that Christmas and New Year sitting beside her crib, desperately hoping. On New Year’s Day, I was able to hold my baby for the second time. She still wasn’t allowed clothes, so one of the nurses had put a small, pink bow in her hair for the occasion. Millie’s tiny fingers curled around mine.
Millie was recovering, but still needed surgery. One day, the doctors requested a family meeting. I proudly showed her off to Dr Jaeggi, the cardiologist who offered us the foetal intervention. He’d saved her, I said, joking that I hated Toronto and would be glad to get home.
Their faces turned sombre. Millie had a second heart condition, they said – pulmonary vein stenosis. The only option was an infant heart and lung transplant, but they’d never undertaken the operation on a child so young or small.
I was devastated. The more I researched it, the longer I spent holding my beautiful girl, the surer I became that there had to be another way. How long would Millie have if we took her home, we asked. A few days, maybe a month. And if she had the transplant, assuming the organs were available, then what? A few years, at best.
We did more research. We couldn’t believe that after coming so far there was no chance she could live.
Then we found a trial for a drug called losartan. There had been promising results in pigs when used in combination with surgical intervention. The doctors agreed to accept Millie on the trial – and, to their surprise, she began to get better.
It was a long road, but they said she might live for a few months now if we took her home to Yarmouth, Nova Scotia. Finally, Millie got to sleep in her own nursery. She met her family.
While we signed ‘Do Not Resuscitate’ orders, she was learning to talk and scoot around on her bottom
Having a child with a congenital heart defect is a steep learning curve. Suddenly, we were nurses as well as new parents. Millie fed partly by mouth, but also needed top-ups via a feeding tube. She needed medication eight times each day, as well as blood-thinning injections.
But she was happy and began to thrive. While we signed ‘Do Not Resuscitate’ orders, she was learning to talk and scoot around on her bottom. She loved to dance. She clapped her hands, kissed us. When Sesame Street, The Wiggles or Baby Shark came on the television, her face would light up with delight. Then, one day, she pulled out her feeding tube and began to eat on her own.
In April this year, the doctors said it was time to revisit our decision not to intervene further – they felt she now had options. We were overjoyed – our baby, with the twinkling eyes and love of life, might grow old after all.
We celebrated every occasion – her first birthday, Christmas, so many milestones. When it was time to go to Toronto for the Glenn procedure, the doctors were optimistic. A week’s recovery, then home. She wouldn’t need more surgery for years after that.
Every day, I took her to the park to practice walking. She was so close to taking her first independent steps, and I was determined she’d have that experience before we handed her back to the surgeons.
In Toronto, we stayed in a hotel where Millie ate ice cream sundaes and went swimming. She played with her toy ponies and slept in our arms. On the day of surgery, she was grouchy because she wasn’t allowed to eat pre-op, and she was hungry. I sang her every lullaby I knew and stroked her beautiful curly hair.
My husband called – screaming, crying, panicking. Millie’s heart had stopped and wasn’t restarting
Millie was in critical care afterwards, but everyone was cautiously optimistic. That night, though, her heart stopped. She needed time, they said, putting her on life support. After a few days things looked brighter, but then she picked up an infection that turned septic. And then came the worst night of my life.
I was at the Ronald McDonald House, a non-profit place to stay for families with hospitalized children a short distance from the hotel, that had become a kind of second home. I was feeling positive, sure Millie would return to her old self. Then my husband called – screaming, crying, panicking. Millie’s heart had stopped and wasn’t restarting.
I ran to the hospital in my pyjamas, going through the doors of the critical care unit at the same time as Millie’s surgeon. After 20 minutes of heart compressions, she was back on life support. Only time would tell, the surgeon said, his appearance dishevelled. This man had come running from his bed in the middle of the night to try and save my baby.
Sometimes she’d squeeze my fingers or blink at the lights, but the neurologist said these were just signs of primitive brain function
The next few days were a fog and Millie was unresponsive. Sometimes she’d squeeze my fingers or blink at the lights, but the neurologist said these were just signs of primitive brain function.
Convinced she was in there, I played music and read stories to her day and night.
The cardiologist told us Millie had a large blood clot blocking the flow to both her lungs.
They could try and fix it, but the odds weren’t good. Again, the doctors wanted us to choose. Shocked, I yelled at them. It didn’t make sense, I said.
I showed them photos of Millie taken just two weeks previously – eating ice cream, posing with the Easter Bunny. I swiped desperately at my phone, looking for pictures and videos to make them see they had to try and save her. Her first time in a swimming pool, playing with puppies, a sleigh ride.
What they were saying couldn’t be true, I shouted. They exchanged glances.
It was agreed they’d carry out surgery to clear the blood clot the next day, and again it went well. But now it was the neurology team’s turn to take us into the dreaded family room.
Millie’s brain was damaged from the cardiac arrest and lack of blood flow, they said. It was large-scale damage, extensive and irreparable. The best-case scenario was Millie might say a few words. She’d never care for herself, be independent. And she’d still need heart surgery.
I looked at my husband and, together, we said, “Enough. We’re done”
This little body, the baby lying in the crib, was no longer our Millie. I felt a calm come over me. I looked at my husband and, together, we said, “Enough. We’re done.”
Arrangements were made to transfer Millie to a children’s hospice, Emily’s House, on May 2nd this year. An overwhelming number of people came to say goodbye to her – staff, doctors, other parents and patients. Millie’s music therapist came to the hospice with us, where we sat in the garden and played our baby’s favourite songs. We held her, kissed her, stroked her hair. I desperately tried to commit the scent of her to my memory.
I kissed her and told her it was ok, it was time for her to go. As I held her, I felt my daughter take her final breaths
After a few hours we took her to her room. I decided to take a quick shower, but the water had barely hit my head when my husband banged on the door, yelling my name. I ran, wrapped in a towel, to climb into bed with Millie. I kissed her and told her it was ok, it was time for her to go. As I held her, I felt my daughter take her final breaths.
My strength left me along with my baby. I screamed, sobbed, called for my own mother. I was gasping, struggling to get the words out.
The doctor wanted to take Millie, to pronounce her dead. She said it was time to decide where I wanted to send ‘the body’. I wouldn’t listen, refused to let go. They finally agreed I could keep Millie with me for the night, but I had to understand she would change.
My husband bathed her little body, dressed her in her favourite pyjamas and brushed her hair. Then he wrapped her in a blanket and tucked her into bed beside me one last time.
The next morning, they sent a grief counsellor to persuade me to give Millie up. I didn’t want her to go back to the hospital – she’d spent too much time there. We decided on a nearby funeral parlour, so my husband carried her to the vehicle and placed her in a small box.
I tried to think about happy things – sleeping in my own bed, being back with our dogs, going to the beach. I promised myself I’d never return to Toronto
I was confused. Where was her car seat? The next few days would be like this. I’d wonder where Millie was – surely she needed me? It took a few days to complete the paperwork and book flights home. Millie travelled to the airport next to me, still in a small box. How was this ok? I tried to think about happy things – sleeping in my own bed, being back with our dogs, going to the beach. I promised myself I’d never return to Toronto.
I began to carry Millie’s Elmo doll with me everywhere I went. Even now, still hold his hand at night to fall asleep, just like she did. I still can’t bring myself to wash him. For a while I wore the same dirty sweatshirt I had on the day she died, just to keep part of her with me.
It’s been three months since Millie died and every day is a struggle. Suddenly she was gone, just like that. In some ways it feels like she was just a perfect dream – one I’m grateful I had.
Millie Grace Robertson. A bright-eyed, curly-haired angel who changed our world with the happiness she brought. I don’t know why her life had to be so short, but I’m so happy she was here and knew how loved she was.
Editor’s note: We’d like to thank Caroline for sharing this incredible story with us. It’s a vivid and moving illustration of parental love and determination and is very inspiring.
Caroline King and her husband set up a YouTube channel, Millie’s Perfect Heart, where they posted updates. The celebration of Millie’s life was watched by many people who had never met her but loved her from the videos. You can see the channel here –
Caroline is also trying to raise C$3,000 for the charity Sick Kids, to be donated in Millie’s honour. Together with her friend, Stefanie Patterson, she has also produced a book – Magnificent Millie – so her little girl will never be forgotten.