‘It is ok darling girl, mummy and daddy love you.’ She took her last breaths in our arms.’: 10-month-old baby girl dies from incurable brain condition Miller Dieker Syndrome, ‘She had a life well lived’

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“After having an ectopic pregnancy in July 2015, I was thrilled to discover I was pregnant in December of the same year. I remember going for an early ultrasound to ensure the embryo was in the correct spot and not another ectopic and the doctor saying ‘everything is looking good.’ From that point I had a normal pregnancy until 36 weeks. I was very healthy, I had extra blood tests and got the all clear from the 10 week NIPT test, the 12 week and 20 week scans. There were no warning signs. It would be accurate to say that I planned energetically to have the ‘perfect’ pregnancy. I did yoga and pilates, ate organic foods, religiously took my vitamins and supplements, played classical music to our baby, read calm birth and parenting books. I did it all. At week 36 my OB sent me for a routine sizing scan, and that is when our world started to fall down around us. My husband, William, and I went into the scan looking forward to see our baby one last time before he/she was born.

Courtesy of Priyanka Saha

The ultrasound doctor – a fetal medicine specialist was taking too long to finalize the scan. I remember having a flash of panic, then she spoke. ‘The brain development we would expect to see is not visible.’ The words that were the beginning of the end.  ‘I’m sorry.’ I went really hot, and then clammy and cold and I cried. I remember calling my Dad, he is a doctor, and I will never forget his tone of voice when I told him what was happening. ‘Oh God,’ he said. It was then – and when I saw my OB being hugged by another OB in the practice before we went in to talk to her – that I started to grasp how serious this was.

The baby’s brain development was not visible on the ultrasound. We were referred for a fetal MRI. The results were catastrophic. The folds in the brain were missing. We were told to prepare for a general life expectancy of 2 years. The geneticist said to us, ‘Even if the baby does survive longer, they will not walk, talk, communicate, smile, be able to eat.’ He said, ‘Your baby has Lissencephaly, but he or she might have the more severe form called Miller Dieker Syndrome.’ Lily did indeed have the severe form of Miller Dieker Syndrome but we wouldn’t be able to confirm it until she was born. Diagnosis day, those terrible words, will be forever imprinted in our hearts. We wouldn’t wish it on our worst enemy. I remember vomiting on myself in the car on the way home. I say now, ‘It is hard to think about those days. Shock, grief, love, fear, despair, deep sadness. It was completely over whelming. It was completely filled with sadness. And yet, and yet, throughout it all there was this overwhelming love – for each other and for our little baby. Absolutely searing, burning love.’

I then went into what my husband Will called ‘reporter mode.’ I wanted to know what we could do, who the best doctors were, how we could cure her, save her. And that led us to Dr. Mills, Lily’s future doctor. We met him and we talked about how we were going to look after our baby. He gave us the confidence to know we could do this. That is an important message from a doctor when you are facing such heartbreak. That time around diagnosis and waiting for baby to be born was the worst of my life. We decided to take the path of least medical intervention and let the baby arrive when he or she was truly ready.

Six weeks later I went into labor naturally, and after 12 agonizing hours, Lily was here. She didn’t cry when she was born, she was quiet, too busy trying to breathe. I remember the entire room was hushed. On edge. But she was so beautiful, so perfect. Holding her in my arms was the best feeling in the world. Despite all the fear about what was to come, our little love was here. She lay on top of me, skin to skin. I just held her as it felt like time stood still. My baby was here.

Courtesy of Priyanka Saha

Initially Lily was in distress with her breathing and we didn’t know if she would make it through the night. It was all so surreal. I remembering drinking a cup of hot tea after giving birth and not really understanding what was happening but knowing that if she wasn’t going to make it through the night I wanted her with me. I wouldn’t allow her to be taken away from us. If she was only going to live for a few hours, it would be in her mamma and daddy’s arms. And no one dared to stop us. Then, like the brave little fighter she turned out to be, she turned a corner.

Courtesy of Priyanka Saha

My husband Will was my rock, I couldn’t have done it without him. He held me through my contractions, he looked me deep in my eyes and whispered to me, ‘you can do this.’ He was a hands on dad and a baby whisperer to Lily from day one. Lily loved her Daddy. After her breathing stabilized there were serious concerns she wouldn’t be able to feed herself. But on day 1 she started to feed from a bottle, on day 2 she began to breastfeed. It was so amazing. By day 6 we were able to go home. Like normal people, we took our baby girl home. And for a little while we were just a normal family with a newborn baby. It was quiet, it was calm, peaceful even. Somedays I would just hold her for hours, staring at her beautiful face and sob, wanting life to be kinder, easier to her. Not being able to comprehend that she might not be here with us in the future.

Courtesy of Priyanka Saha
Courtesy of Priyanka Saha

We wanted Lily to live as good a life as possible and with support for our medical team, for it to be as least medicalized as possible. We were lucky and proud to say that she did, and in her short life of 10 months and 15 days, she traveled across Australia to Sydney, Bondi Beach, Queensland’s Gold coast and Noosa, all over Tasmania and even internationally to New Zealand (yes she had a passport). She spent many hours being cuddled and loved by her extended family, grandparents, aunts, uncles, cousins, and dear friends. Their unwavering love for our girl, their tenderness for her, and grief now she is gone, and the way they too remember her in their hearts in our everyday lives is a love like no other. Without their support it would have been much harder.

Courtesy of Priyanka Saha
Courtesy of Priyanka Saha

My husband said early on, ‘We want our baby to feel the sun on her cheeks, the wind in her hair, the love all around her, and if she can experience that in her life, that is a life well lived.’ And she really did. I like to say that she did more in her lifetime than many others in an entire adult lifetime. Despite doctor’s dire predictions, she did smile, she could communicate in her own way, she even began to gain strength and we discovered her absolute passion for music (a trait which her little rainbow baby brother also shares). She would move and wiggle to the beat of music and smile and coo, communicating like many ‘typical’ babies under 1 year old. Lily’s smiles are the best thing I will ever see in my lifetime. I know that.

Courtesy of Priyanka Saha

When Lily was about 5 months old I noticed she began having seizures, they were very scary and after that her health began to deteriorate. We worked hard to keep her supported at home. It was incredibly challenging and difficult with round the clock care required. In the days before she died one of us would stay awake all night to care for her. We did night shifts. We would hold her, kiss her, soothe her, cuddle her. When Lily was 10 months and 15 days old, she took her last breaths at home, and then she left this world peacefully in the arms of her mamma and daddy. We cuddled her until she was gone, telling her, ‘It is ok darling girl, mummy loves you and daddy loves you,’ over and over again.

Courtesy of Priyanka Saha

I remember sobbing and crying out, ’my baby, my baby!’ After she died, we bathed her and placed her in her cot in our room and we all spent one last night together. I remember Will saying, ‘She is so beautiful, our girl is so beautiful.’ She looked so peaceful, like she was sleeping. The next 4 days Lily stayed in a Cuddle Cot at our Hospice – these were the first nights she ever stayed in another room from us her whole life. We were able visit her whenever we wanted until her funeral. Our family came to say goodbye, we sang to her, we talked to her, we cried with her.

Courtesy of Priyanka Saha
Courtesy of Priyanka Saha
Courtesy of Priyanka Saha
Courtesy of Priyanka Saha

In the days and weeks after her death we were devastated and most of it is a fog. We learned to get close to our grief, our pain. It was the only way to keep going. We knew that Lily had a life well lived, however short. One to be proud of. Slowly we began to see that deep sadness and thankfulness, love and devastation can be felt together. It’s not one or the other, and that humor and sadness can be side by side. In fact, we said at her funeral. ‘There is very little that good cup of tea and a sense of humor cannot improve, and even in the darkest of moments, Lily taught us the beauty of love, light and laughter.’ Without it we would never have survived. We like to joke that despite how difficult it was we had a better first year as parents than some others who really struggle adapting to normal parenting. We embraced it all despite how dire it was, because it was the only time we had. We couldn’t take any of it for granted.

Courtesy of Priyanka Saha
Courtesy of Priyanka Saha

Following her death we set up the Lily Calvert Foundation. The Foundation supports pediatric palliative care to support other families with sick children, and aims to encourage conversations about grief and child loss and break down the taboos that exist in society in the way we talk about baby loss. We have found that too often, people ignore our loss or are afraid to mention Lily because they don’t know what to say, or they feel awkward about making us upset. We want the world to know that we LOVE talking about our girl. We want the world to know it is ok to ask questions if someone tells you they have lost a child. Ask about their baby! Say their name, ask about their favorite things. It is so much better to talk about than ignore. You won’t be making us any sadder than we already feel every day. Baby loss parents don’t ever forget that we lost our babies (to us it’s laughable that anyone would think so) – so mentioning it won’t ever make it any worse. I find it much worse when people say nothing. It is awkward. We talk about Lily every day and speaking about her honor’s her memory.”

Courtesy of Priyanka Saha
Courtesy of Priyanka Saha

This story was submitted to Love What Matters by Priyanka Saha of Melbourne, Australia. You can follow her journey on Instagram and her website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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