This is my journey with Iris
I have been so worried and scared to share this story. I guess I’m scared of what people will think of me and don’t worry for a long time I thought the same way about my self!! But as the big 6months since her birth draws closer, I thought it’s time I share our journey, share our baby Iris with you.
On the 30th August, after having a very cruisy first trimester, I was booked for my 20week routine scan. The time that should be so exciting, finding out the gender of our unborn babe and knowing he/she is safe inside. My partner and I turned up to the radiology, had our scans and were sent home. Unfortunately Bub wasn’t in a position to see the gender. The very next day I had a call from my doctor, he wanted to see me immediately. Of course my anxiety went through the roof.
I visited the doctor the next day and he told me that I had a very low amount of fluid around baby. We were sent for another local scan and told to drink even more water than I already was. This scan confirmed bunny was a little girl and this got our hopes up. It also confirmed she had club feet (research it) I research every option we had for a baby with club feet, basically it would have involved operations from birth to straighten her feet then wear special boot to keep them
Straight for the first 18months of her life. We prepared ourselves for this. Scans also showed that Iris was 2 weeks behind in growth development.
In early September I had an appointment with my midwife at the hospital (the same midwife that I dealt with for Ruby) I had my scans looked at and then a specialist came in and we had a meeting. At this time i was alone, Ben wasn’t there to hold my hand or take in the information. Basically I was told that because of the low fluid the babies chances of survival are not good and I would need to travel to Sydney to see the experts for further examination and options. Hearing all this on my own, I walked away from that hospital that day in a shower of tears. I went home and sat on the lounge and cried, I cried for my baby, I cried for what might be ahead and I cried for what might not be ahead.
On the 23rd September, the day before my birthday, we had travelled to the neonatal centre at Nepean hospital for more scans, we were given the news no expecting parents want to hear. The fluid had decreased 6cm since my last scan (only 3 1/2 weeks ago). Iris was diagnosed with Arthrogryposis and An amniocentesis was performed to see if there was any genetic abnormalities but this wouldn’t be know for a week or so. We were then taken to a room where we were made aware of our options. Continue with pregnancy and see what happens… I found hope in the fact that Iris was still growing and breathing and I could still feel her kicking. Our other option then and there was Termination of Pregnancy due to quality of life. At this stage this wasn’t an option! I was living in hope that it was all a nightmare. We were then sent away while we waited for the amino results and from there we would make another appointment..
As you could imagine it was quite difficult to celebrate a birthday with that news just layed on me. We did our best to celebrate Ruby’s 2nd birthday on the 25th before we headed back to Dubbo.
I waited by the phone daily and then Ben received the phone call. I was hoping something would be found to give us a reason for this awful event happening to us. The amniocentesis came back with no abnormalities. We were then booked for another appointment and scan to check growth and talk delivery options and discuss the needs of Iris.
October 7th, 2016. Just another trip to Sydney, just another scan and just more bad news. The amniotic fluid around Iris had now decreased and she had 2cm of fluid around her. I never did find out what a normal level of fluid was but we could see on the ultrasound there wasn’t really any of the “black part” around the baby, it was baby against uterus wall. So in a matter of not even 6 weeks the fluid had decreased from 10cm to 2cm. This is what started us thinking about ALL our option more seriously. We met with the genitive team at Nepean who were happy to answer all our questions and were able to tell us about the implications of arthrogryposis. Iris would have spent most of her infant life possibly her childhood and adolescent life in hospital having surgery and rehabilitation to the muscles in her body. As I’m aware, arthrogryposis happens when the body is in one position for a prolonged time and the body muscles and ligaments “cease up” and when this happens in infants the muscle stops developing. Iris would have been in a wheelchair for her life. We were informed that our situation was a 1 in 17000 pregnancy, not that I would wish this pain on anyone else but why the F**k did this happen to us? What had we done to deserve this! This poor unborn baby of ours didn’t get a choice. I hated my self and the thought of termination drove me to believe I was murdering my baby. One of the doctors we dealt with said to us “sadly, sometimes life is just SHIT”
We had to question ourselves “does this baby deserve that life?” I hated even having to think about asking myself this. We discussed the future appointments with a fortnightly visit to Sydney for the remainder of the pregnancy, and then having a planned c-section delivery in Nepean come January.
We weighed up all the “pro’s” and all the “cons” Iris was always of most importance with this list and how sad and horrible her life might be even with a loving family around her. Ruby came next and what would happen to her life with all our attention and time on Iris in hospital. Being a teacher in a high school, I have had some experience in the special education department and the stress the parents of these kids are under and with limited support, I had to consider my marriage and the effects this situation could have on our relationship. By this time many tears had fallen from both Ben and I, I was falling apart more everyday. I had another midwife appointment that week where we shared our decision with her to sadly terminate the pregnancy due to the poor life our precious baby girl would have. I’m more than proud to call Marley (our midwife) a dear friend, she had us in a private room and we just cried together. She too is a young mum and couldn’t even comprehend the pain in our decision.
Can I just add as I’m writing this with tears streaming my cheeks, all the medical staff we dealt with in both Dubbo and Nepean have shown us nothing but support in our decision.
She made all the arrangements for us and we ended up having to go to Sydney twice more before meeting our baby. We had many appointments with social workers and physiologists who provide details many tissues for us as we discussed with them our reasoning behind our decision.
We thank our parents and siblings as well as close friends who knew of our situation for your love, support, cuddles, and privacy during this time. To our Ruby girl, we are sorry baby that we couldn’t give you your baby sister this time around. We promise we will try to in the future. Iris will forever be you guardian angel, your little sister who will do everything with you from above.
I realise not everyone would approve of our decision and everyone has a freedom of speech, please I ask you only leave supportive comments as I still hate myself daily for this event in my life.
If you’d like to read my birth story I will have it up in my next blog post.
I thank you for you support and please know that sharing my story is helping in my path to recovery. A grieving parent will never stop grieving for their lost child, just as they will never stop loving them!
Iris has given me the strength to help make more of society aware of infertility, pregnancy and infant loss in Australia.
Written by Melanie Sharkey, Iris’s Mother
The week I gave a piece of my heart away forever
In my last post, I spoke out about my journey with Iris. This post is a carry on from that. The most horrible week I have lived through. The week we had to say hello and good bye to our baby girl. The week we left the hospital with an empty belly, empty arms and a shattered heart. 💔
You may recal from my last entry, I talked about my amazing midwife in Dubbo, Marley. When she began organising the termination, we were advised that it would be best for Iris to be delivered in Sydney with our specialist we had been visiting since September. This worried me as I’d have no support their from friends and family. I remember walking out of the hospital that day (it was a Wednesday) in tears on the phone to Dãd, asking him and mum to come out (an 8hr drive) to look after Ruby as we had to be in Sydney on the Friday.
Mum and dad arrived on the Thursday afternoon and we left early Friday. We met our high risk midwife at Nepean, we had appointments all day with the doctor (for another scan) then a social worker, a psychologist and then a counsellor, all of whome had to confirm we were in the right head space and we had thought this decision through and that we were making the right choice for our situation.
Tracey, our midwife at Nepean helped us organise our accommodation at bear cottage (similar to Ronald McDonald house) for Monday and Tuesday nights as we wouldn’t be admitted to a ward before Wednesday.
We headed back home on the Saturday morning, I’m sure you can imagine, all we wanted to do was be with Ruby. The little darling had no understanding of why mummy and daddy had to keep going away. On the Monday, we headed back to Sydney for what was turning into the worst week of my life.
I contacted Tracey as we arrived at the hospital, she welcomed us both with a massive cuddle and helped us settle in to the room at bear cottage. I was booked in for the procedure to begin at 8am on the Tuesday. The doctor started by doing another ultra sound, at this point t I was so emotionally drained and the guilt had built so much that I couldn’t look at the screen. He explained the procedure, under ultra sound and local sedation, a needle was inserted into Iris’s heart, a salt poisoning was then injected and it would be 30mins before her heart would stop. Ben had brought some headphones and music for me to listen to while this was happening to drown out all the conversations between doctors and nurses. I remember Ben sitting next to me clenching my hand and Tracey standing , wiping my tears away while tears ran down her face too. Once this was done, we then had to wait… half an hour had past and we were taken back into an ultra sound room. Iris was a fighter, that was sure. Her heart was still going, slowly but still beating. As the doctor was giving us the options of having some more poisen injected or waiting, Ben spoke up and was t putting me through that again just yet… the Doc soft interrupted and said her heart has just stopped. Ben watched it all happen on screen. That will be a memory he will never forget. The look on his face at that moment brought me to tears. As we walked from the room, sobbing, I remember see the waiting room full of expecting mothers and thinking all those womens anxiety levels and blood pressure will be going up now. I just hope they all had smooth, stress free pregnancies.
I was given some medication to stop the pregnancy hormones, and some sleeping tablets for later that night. We were told we’d get a phone call the next day (Wednesday) when our room was ready and the process of inducing labour would start. By the time we left the hospital that morning it was only about 10:30. We could have chosen o go back to the room of blank brick wall and felt sorry for ourselves and cried all day. I was quite ready to do that! But instead Ben being the amazing husband he is, took me on a shopping spree and lunch in Cronulla, a walk on the beach. This kept my mind busy and helped me enjoy one of our last days with our baby, even if she had already passed. We talked to her, told her about her big sister and how Ruby will always know about Iris and be encouraged to talk about her. We told her we loved her and that we were sorry!
On Wednesday, we waited and waited…. I had had the worst night sleep, I was so used to feeling her moving during the night and that just did t happen. We received a call at 2pm to notify us that our room was ready, so we headed in. We settled in as good as we could into our private suite in the anti-natel ward. The doctor arrived and inserted a medication to soften the cervix and basically start the process.
Later on Wednesday night I was administered some more of the medication ( it was such an uncomfortable experience) I was then told, they’d see me in the morning. Nothing happened over night so again I was given some more about 10am on the Thursday.
It was about 1oclock and finally things started to happen, the pain intensified quite quickly. I had always opted for the epidural. There were no delivery rooms available so they gave me every other pain killer which did nothing. By 3pm, I was being wheeled down to the delivery room, it was too late for the epidural, on my way there, I had lost a litre of blood (ben later said, he was worried for my life) they got me into a delivery bed and gave me some gas and 3 contractions later, she was born. Beautiful dark spiky hair, feet first, she landed at my ankles…. silen and weighing just 1050gms. Ben’s strength crumbled as he put his head on me and cried. The nurses took Iris away and cleaned her up, took her measurements and take her hand and foot prints. I was exhausted both physically and emotionally after a firecracker 2hr high intense labour. I remember just feeling numb… the guilt of what I had done was overwhelming. Ben went and spent time just being with her. He had fallen in love all over again.
By the time we were back in our room, it was around 6pm. I was knacked and just wanted to sleep. The nurses brought Iris in early the next morning. It was so hard watching them wheel her in, in a refrigerated coffin (basically). They removed the blanket that was covering her. I was in so much shock and shaking profusely, I held her cold hand, fell into Ben’s shoulder and cried. We spent a couple of hours just admiring her and being with her! We could see the complications of the arthrogryposis which I guess was a re-assurance that we had made the right choice.
Heartfelt, an amazing foundation full of generous photographers who donate their talent and time to families in situations similar to ours visited us, we were able to capture professional images that we would be able to keep for ever and eventually show Ruby and any future children the angel sister.
The photographer finished up and we spent some more time with Iris before saying the hardest goodbye. I knew deep in my heart, that she was in a better place but NO parent wants to or should have to say a final goodbye to their child. We kissed her goodbye and asked her to watch over her big sister. It is a horrible memory I have watching the nurses wheel her away, knowing I’ll never see my baby again….
Soon after, we were discharged and just like that, it was done. I walked out of that hospital on Friday 21st October with all the regular post-pregnancy symptoms but instead of a crying baby, I had a handful of teddy bears and funeral information.
My mum and Dad had brought Ruby down and we cuddled her so tight that night. I was so fortunate my best friend (an aspiring midwife) was close by and able to visit at the hotel that night too! We all shared a bottle of wine and toasted to my baby girl.
On Saturday, we headed back to Dubbo to start our grieving journey and pack our house up to move back to our home town where we had family to support us and Ruby during this time. I remember so vividly of Ruby still kissing my empty belly goodnight on her way to bed. The little doll had no idea and every time, it broke my heart again.
When she is old enough to understand, I will explain it all to her! She is aware that Iris is a star in the sky and we sing twinkle twinkle every night. And at this stage in her life, we thought that’s all she needed to know.
I strongly encourage all mums to share their birth stories. For a grieving mum, I have found this to be very therapeutic. The female body is amazing. The fact that most of us women can house a growing baby for 9months and go through such pain all for the love and joy they bring… it should be documented. Everyone’s story is different both happy and sad, I’d love to hear yours!
Written by Melaine Sharkey, Iris’s Mother.