Ivy’s story
What do you do when you have your beautiful, long awaited baby daughter; and then she dies at only six days old? I never imagined we would have to answer that question.
Our little Ivy Lillian James was born on Friday, October 23, 2015 eleven weeks, and a few days before her due date.
We were first aware of Ivy, 22 weeks earlier, when after more than a year of trying to conceive, I was undergoing an ultrasound to find out if I was ovulating. About 10 seconds into the appointment the sonographer, exclaimed with delight that I must have been ovulating as there was a baby! I was already 6 weeks pregnant.
As excited as I was, it sounds strange, but I wasn’t surprised. A week earlier on holiday our 3-year-old Son Lennox had cuddled up to my tummy and asked me if the baby was enjoying the sunshine? I laughed it off and said that there was only a food baby in there after my buffet breakfast, but maybe he knew, as that evening after the ultrasound, I opened our front door and he ran down to greet me, when I handed him the blurry ultrasound print off, he swung his little arms around my neck and said a baby! That’s my baby sister isn’t it?!
Our excitement and love for Ivy began in an instant. The second we first saw that little flicker on the screen. The first time we heard that incredible sound of her heartbeat and those first little flutters that become playful kicks. The three of us shared our everything with Ivy. We wished her goodnight and good morning, we sang to her, we talked to her, we shopped for her nursery and bought her the cutest outfits. Lots & lots of outfits!
It’s hard to tell a positive birth story when your baby never comes home with you; but the moment she was born was, and will remain, absolutely beautiful.
Giving birth
I was booked in for a planned C-section as I had delivered Lennox at 36 weeks via an emergency caesarean under a general anaesthetic, as I became very sick very quickly with sudden severe pre-eclampsia and HELLP syndrome. I literally worked until 4.30pm in the afternoon and he was delivered just after 7.00pm, it was very fast. But after 10 days in hospital and 6 weeks on blood pressure medication, my blood platelets, liver, kidneys and blood pressure were back to normal levels.
My Obstetrician assured me that it was very unlikely that I would suffer pre-eclampsia with a second pregnancy and that they were monitoring me closely.
On Monday 19 October I called my Obstetrician as I was feeling unwell and had noticed that my face was puffy, not a symptom I had suffered during my pregnancy with Lennox, but one that I knew could be a sign of pre-eclampsia. I went in and he checked me out and said that yes, my blood pressure was high and that I needed to come back the next day. The next day my blood pressure was higher again and I was prescribed blood pressure medication and sent off to pathology to do my gestational diabetes test and collect a bottle for a 24-hour urine sample.
By the Thursday, I was feeling horrendous and went and saw the Obstetrician again to be told that the good news was that I didn’t have gestational diabetes but that unfortunately all the other test results weren’t good. I was told to double the blood pressure medication I was taking and to contact him if I continued to deteriorate.
Early on the Friday morning I woke my husband complaining of a splitting headache. He called the Obstetrician who instructed us to meet him at the hospital.
On arrival, I was put on a magnesium drip, had a catheter inserted and Ivy was monitored. When the Obstetrician arrived, he informed us that they had picked up an un-reassuring heartbeat from Ivy and that she would need to be delivered that day. The private hospital we were at couldn’t accommodate an almost 29 weeker so they saw me into the ambulance with a midwife and with the lights and sirens on, and Stew following behind we headed the Royal Women’s Hospital. On arrival I was taken to a theatre filled with 30 people. To my surprise they quickly prepped me for an epidural and I was lucky enough to be awake as Ivy was delivered.
It’s hard to tell a positive birth story when your baby never comes home with you; but the moment she was born was, and will remain, absolutely beautiful. She was tiny but breathing on her own and showing all the positive signs of a small (she only weighed 911 grams) healthy little girl. The atmosphere in the theatre was nothing short of jubilant everyone was very happy and relieved. We held Ivy, kissed her and told her how excited her big brother would be to meet her.
Our world completely fell away, devastation doesn’t even begin to describe our pain. We decided that we wanted Ivy to only know love and that the way we could be the best parents we could possibly be for her, was to re-direct her care.
The next 24 hours are a blur to me. I was in a critical condition due to the pre-eclampsia and HELLP syndrome. From my husband’s account of that time, Ivy was doing well in NICU and it was my condition that was causing the most concern. But then I turned a corner and started to improve, I was wheeled down in my bed to visit Ivy in the NICU and was so proud of our little girl.
Later that afternoon, we were given the news that Ivy’s routine brain scan had showed that she had suffered a massive brain bleed (an Intraventricular haemorrhage (IVH)). Our world completely fell away, devastation doesn’t even begin to describe our pain. We had already begun to plan for what we knew would be a hard month or two with Ivy in the NICU but had never imagined that she could be so unwell.
We decided that we wanted Ivy to only know love and that the way we could be the best parents we could possibly be for her, was to re-direct her care.
Leaving the NICU
The following day more information about the extent of Ivy’s condition was shared with us. We are forever thankful to the amazing doctors and nurses that helped guide and support us in making decisions that seem impossible to make.
We decided that we wanted Ivy to only know love and that the way we could be the best parents we could possibly be for her, was to re-direct her care. We made the decision that as my condition improved, we would move Ivy out of NICU.
When Ivy was four days old, we took her out of NICU and off all the machines that were assisting her. The incredible team had told us that she may breathe for a few minutes on her own or a few hours, there wasn’t anyway to know. Our beautiful Ivy breathed on her own for two days.
I am so grateful for those two days, for so many reasons. Ivy spent time with her grandparents, uncles, aunties and of course her adoring big brother. Ivy was still alive for us to touch, cuddle, bath, dress, talk to, read to, kiss all over and just breathe in.
If your reading this as a parent who has lost a child too, I am so very sorry, it’s not fair that the universe has dealt you such a cruel card. But please know that even though it may feel like it, you are not alone.
We took Ivy to the park, out for lunch and out for breakfast. I know that we poured every ounce of our positivity into Ivy; every hope and dream we ever had for her. I used up every wish, every prayer, that this lifetime has given me in the hope she would miraculously recover; and come home and grow up with us.
Six days after she made our hearts explode with excitement & love at her arrival, our beautiful Ivy Lillian passed away peacefully in our arms, after a very special day in the park with her family.
Ivy lived, she was here, we held her, she felt sunshine on her face, wind in her hair, grass on her toes and water on her skin.
Those two days with Ivy out of NICU are what I cling to in my darkest moments. Ivy lived, she was here, we held her, she felt sunshine on her face, wind in her hair, grass on her toes and water on her skin. Sometimes I feel as though I just play those memories in my head to make myself believe she was real. I know she was, we have her birth (and death) certificate that says so; along with memory boxes and cherished photographs and videos. But when a child’s entrance and exit from this world is so fleeting, your mind can start to forget some details as time passes.
I am still unsure how I have processed that this happened to us by ‘chance’. That for some reason we had to endure the cruel twist of fate in life that is losing your child. Knowing and understanding what happened is easy enough; with thanks to medical science, we now know that sometime in the 24 hours before Ivy was delivered, due to the preeclampsia our placenta ruptured, only by a very small percent, but in a location close to the cord causing Ivy’s brain bleed. However, for our heads and hearts to truly comprehend why this had to happen, is an answer I fear will escape us for a lifetime.
If your reading this us a parent who has lost a child too, I am so very sorry, it’s not fair that the universe has dealt you such a cruel card. But please know that even though it may feel like it, you are not alone. I hope that our family’s story and the others on this blog help to shine a light on the darkness, provide a source of empathy and importantly a connection.
What has helped the most in navigating shock and grief ?
We were really concerned for our eldest son and helping him navigate the grief of losing his much longed for little sister. There is a lovely book that we were recommended called the 'Invisible String' by Patrice Karst. We found it was a lovely story that helped explain that he would always have a connection to Ivy and was still a big brother.
Five years on and still not a week passes that he doesn’t mention her and how much he loves her. We actually gave a copy to all the children that attended Ivy's funeral and I know many families still talk about Ivy when they read it, which is the best feeling.
There is nothing anyone can do to take that pain away but there are things people can do to ease your day and show support. Kindness is what will get you through, accept it. Don’t be afraid to let people help you.
When we can, we laugh. We laugh often, hard and loud.
What piece of hope can you offer someone who is experiencing loss?
You never have to let go of love.
I’m sure you don’t feel brave, I don’t think I am. When people tell you that you are, they are expressing that they don’t know how they would react if they were faced with the loss of their child. But what do any of us do when life throws something your way that you weren’t anticipating? You deal with it; you might not like it, but you face it head on. Why? Because you have to, there is no alternative. You are still here; still carrying on and will learn to smile again.
Part of your grief will involve dealing with how others react, both positive and negative. This will be hard, sad and confronting but conversely some, often those who you least expect, will also provide great comfort and support.
How do you honour Ivy?
My husband and I were determined that Ivy’s death would not define us. We don’t want Ivy to be the reason we don’t succeed at something, or the reason we don’t pursue our dreams together. We want Ivy, to be the reason we do.
We talk about Ivy, we have photos of her on display with other family photographs in our home. We include Ivy in family celebrations by donating to the wonderful charity Heartfelt photography, in her name. We celebrate Ivy’s birthday every year with a cake and flowers and whenever Ivy’s big or little brothers go to Royal Park Nature Playground, they always refer to it as Ivy’s park. That is just some of the ways we keep Ivy’s memory alive.
Katie lives in Melbourne with her husband Stew and three sons, Lennox, Edmund and Monty.