Guest blogger Dneika shares her story of loss.
Trigger warning: If you have experienced a pregnancy loss, support is available. Please see the bottom of this blog for relevant organisations.
Most parent's can remember they day they were told their child or baby never made it. They day they are told their child is dead.
“Look at me,” I remember those words clearly. My midwife kept repeating them to me as I was being prepped for an emergency c-section. I was being poked and prodded by at least 6 different people; one person putting an IV in, one doctor breaking my waters, a midwife undressing me, another midwife watching my stats, my normal doctor rushing from his practice next door to read to me and make me sign all the paperwork to go into surgery. All this and the main thing I remember is “Look at me.” All she was doing was holding my hand and telling me to look at her. You see all this fuss was happening because my son’s heart beat had dropped drastically.
I didn’t know at the time something horrible that I wouldn’t wish upon my worst enemy was about to happen. I was rushed to the other side of the hospital (yet I have no recollection of this except little bits and pieces) and put under (general anaesthetic). I remember my anaesthesiologist telling me to just breathe and then it’s all nothing. My son was delivered not breathing. And all this took a mere 14 minutes.
My mother-in-laws were there with me as my partner was at work, they were the unfortunate ones that had to call my parent’s across the country to tell them that I had had an emergency c-section and that their Grandson did not make it. I’ve heard all the stories of how each of my family got told that Ryker never made it. My older sister was bathing her daughter (who is 3 months and 1 day older than my Ryker) and nearly dropped her. My younger sister was staying at my older sister’s house and had to take my niece off my other sister, and they cried together. My mum and dad didn’t answer the first phone calls from my mother-in-laws and I think they regret that nearly every day. My younger brother was so silent I think my mother was deeply worried about him (he is the loudest person in the room), and then my baby brother, he's still so young only in primary school, my parents didn’t know how to tell him. They told him the day before my mum, older sister and niece flew across the country to be with me.
My partner doesn’t remember his trip to the hospital to this day. He has no recollection of it at all. He remembers seeing my doctor at the elevator waiting for him and him looking down. His told me that’s when he knew something was wrong. They rode the elevator up to where his mother’s were and my doctor told him what happened.
And then there was me. I was still drugged up, I don’t remember my doctors talking to me, but I remember them telling me he didn’t make it. I don’t remember holding my son for the first time. I don’t remember my family surrounding us, I don’t remember my brother-in-law making a joke that Ryker could be his (they have the same hair). All I remember is that they told me that my son didn’t make it, my partner told me they had to tell me more than once because I was not with it at all.
I may not remember the details, but I do remember the pain. I remember the pain because I feel the pain every day. I have felt the pain every day since my son hasn’t been here. But what did make it easier? My midwives, my doctors, my family and my strength, one midwife in particular made a difference. The one who was telling me to look at her; she became my main midwife for my 4 day stay at the hospital.
El was a beautiful woman who comforted me when I needed it, who just sat there when I needed. Who treated my son with respect and dignity that he deserved. She bathed him for me when I couldn’t get out of bed, she brought him to me when I wanted him, and she let Ryker stay with me. She in some way was my life saviour, from “Look at me” to “Call me anytime you need me”. El made all the difference.
I stayed at the hospital for 4 days. I spent 4 days with my son. It was not nearly enough time. My mum, sister and niece arrived on the 3rd day and spent the 4th with me, Ryker and our family. We said our goodbyes on that unforgiving day. I went home to plan a funeral, when I should have gone home with a newborn baby.
We received flowers everywhere, but in a lot of ways I didn’t want the flowers. I didn’t want to be bent over in pain. I didn’t want my baby’s stuff in his room shut up. I wanted my baby; I wanted a happy beautiful baby. But I didn’t get what I wanted. I didn’t get what I needed. I got what I was given.
Not long after we had to hold a funeral for my son.
The funeral of a baby is never easy to attend, but then imagine it’s your baby. It’s your baby’s funeral. Tuesday 3rd February 2015 I went through the ordeal of my son’s funeral. Before the ‘event’ happened we had to plan his funeral. We had luck finding a funeral director that specialised in infant death. He was a very kind and informative man; I guess he needed to be with what his job was. He asked Tim and I how we wanted the funeral and what we wanted. And to be honest Ryker had a very simple funeral. There was no big sha boom, it was simple and bright. We had asked all those that were attending to wear bright coloured clothing as I don’t see an infants funeral to be dark and gloomy. But to be filled with joy and light, for everything they could be. Why taint something so perfect with something so dark? You wouldn't want to kill a flower or butterfly with pesticide.
We saw Ryker before the funeral at a little funeral home; he was dressed in his finest ‘suit’. We had bought it before we had given birth so it seemed fitting that he wore something that was purchased with love. He had his little socks on and a little blue tie. I can remember him as clearly as someone standing before me, I regret not having photo’s taken of him at the funeral, because it would be the last time any of our family would see his sweet little face. The last time to cuddle, to just look, to look at the perfect little creature we made. Because that is what he was; perfect, eternal and simply lovely.
As a family; my partner Tim, mother, sister, niece, mother-in-laws, brother-in-law and a family friend we said our private goodbyes before heading to the cemetery. We had a small ceremony at the Infant’s Butterfly Garden at Karrakatta; those that attended were welcomed and supportive. They were what we needed on the day, not to be alone but to be loved by those who would. We lit a candle for Ryker, had poems read aloud and had a beautiful balloon release at the end of the ceremony. The ceremony itself was small and intimate; and I would not of changed a thing except to have my family from Queensland attended (my father and younger siblings could not attend).
I have never said this was my grief alone, I know every one of my family and friends have felt my grief in one way or another. Even if it was for a fleeting moment, they felt it. I can completely understand that they too hurt. But I am selfish. I am and will always put mine and my partner’s grief before theirs. I will not dwindle our grief to console others. As harsh as it may seem, their grief will not match our grief.
My little boy was cremated and a day later my partner and I went back to the Infant Butterfly Garden to 'collect' his urn. To bring our boy home for the first time. For the rest of my life I will tell you that was not the way I was meant to bring home my son. He was meant to come home in a car seat. Something they never tell you when you cremate is that they give you a certificate to basically say what is inside the little urn. Maybe they do tell you, and maybe I was too out of it when I was told. But that was one of the little shocks I got when I bought my little boy home.
Regrettably writing about Ryker’s funeral I must inform you that on the day, there was no ‘Aha’ moment, no butterfly to console me, no beam of light, I didn't feel my son near and that there was no happily ever after. I felt relief and a weight off my shoulders. People tend to think that once the funeral has come and gone that everything will go back to normal. It will for everyone else, but unluckily it won’t for us.
While many parent’s have said the funeral of their child was as nice as a child’s funeral could be, there really is something special about attending a child’s funeral. They are heart breaking beautiful and something you really do not want to attend.
We had to wait what felt like years to get the results from Ryker’s autopsy. But we finally did.
11 March 2015, you would think my baby brother’s 18th Birthday would be one of pure celebration, and it would of been had I not expected to get my autopsy results back on the same day. I had wanted to call him. My appointment wasn't until 3pm, but I felt guilty, I didn't want to bring down his day. So I didn't call, I was selfish. I didn't want any of my family to be upset on my brother’s special day.
Tap, tap, tap, tap my foot and the vinyl floor of KEMH (King Edward Memorial Hospital) seemed to have a rare connection that I couldn't keep them apart. Maybe it was something to concentrate on maybe it was boredom, or just maybe it was to pass the time away. Somehow I think it was a mixture of the three.
I had been squeezing Tim’s hand since we had been picked up by his Mum’s; the nerves had kicked in before we left the house. We were on one of our final ‘adventures’ to finding out what had gone wrong with our little boy, and why he had died before he had been birthed. I don’t know if you have ever been in this predicament or how your hospital handles it, but at KEMH you get to the main entrance head down a hallway labelled ‘West Wing’, it’s not a long hallway but it’s got pretty hand craft pictures on the walls, most likely created by the young children staying at the KEMH. When you reach the end of the hallway, you get a receptionist or as the clinic itself is called Perinatal Loss Services; this lady will point out a seating area specifically for parents with similar circumstances.
In this special waiting room was two other couples, and they looked as nervous as us. One of the couples reminded me why we needed to be strong for one another, as they looked so disconnected from each other that it reminds you that not every couple can deal with the pressure of losing a child.
We waited, and then waited some more and then finally we got shown to a room.
We first went through my results; I was a perfectly, unremarkably fine. Nothing showed up in any of my extensive blood tests. I had normal glycated haemoglobin, normal thyroid function, negative TORCH screen and all bloods associated with pre-eclamptic changes were normal. My thrombophilia screen was negative and my acquired thrombophilia screen showed a decreased protein S which is most likely consistent with pregnancy and interesting an elevated protein C. Nothing out of the ordinary.
We then went through the events of the day when Ryker was born, the Doctor asked me to explain in my own way what had happened. I don’t think I need to repeat what happened. Then we got to the part we had come for. What was wrong with my boy?
The post mortem examination of Ryker showed a slightly small baby, but what was more noticeable was an extremely small placenta at only 310gm and significant placenta infarction with areas of avascular villi and thrombosis in the chronic vessels, in English that all means that Ryker had blood clots to 5% of his placenta and that a 'normal' placenta size is anywhere between 500-600gm, and that his placenta had started to die. There was no evidence of infection. The small placenta was sadly unable to support Ryker through labour.
The specialist doctor then explained that the most likely cause of all this was that I had MTHFR gene (a blood clotting gene) which can be associated with hyperhomocysteinemia and thrombophilia. I was asked to go and get gene testing done the next day. And if my results come back positive for MTHFR, then my partner Tim would also be getting check as the combination of an abnormality on both sides can lead to fetal thrombophilia which can explain the thrombosis in the fetal vessels seen in my placenta.
After all this explaining and question asking of what could of caused it all and could it be detected earlier, and if so what would that mean. I got a shocking answer. My son was never really going to make it, and if he had he would have been severely brain damaged with a likely chance of Cerebral Palsy. Because through all that mumbo jumbo above I forgot to explain one main thing, Ryker was never getting enough oxygen to his brain and that my placenta didn't fully attach to me. In some ways Ryker passing is a blessing in disguise, that doesn't mean I don’t love him and that I wouldn't have loved him had he survived. Because I would have put my life on hold to care for that little boy, what I mean by blessing is that he isn't suffering now. He feels no pain. That is my one silver lining in my whole journey, is that my son is not suffering from something that nobody could have stopped.
The conversation then turned towards a different topic; the next pregnancy, whether or not Tim and I would try again, and how soon or how far away.
I found out that my next pregnancy I have been advised that I should wait 6 months after my c-section to try again (TTC) so around July if want too, my pregnancy would also be High Risk and the amount of drugs I will be taking through the pregnancy is astonishing, here are just some; High dose of Folate at 5mg a day, Pyridoxine 100mg a day, Clexane injections (blood thinners), baby Aspirin and the usual pregnancy vitamins, as well if needed I will have to go back onto Labetalol (High blood pressure Tablets, I had to take them through Ryker’s pregnancy) at 100mg. And then there are the extra ultrasounds (after the first trimester they will be every 2 weeks) and also throughout the pregnancy they will take samples of the cord blood which is basically a nice big needle in the stomach. I have also been advised it would be best to schedule a c-section between 37 and 38 weeks.
So all in all, Rykers autopsy results came back with something. That is more than some parent’s get. We were prepared for no answers and I think that is what helped the most. We were told that most stillbirths go unexplained. I am one of the very few lucky ones that have a reason that their child is not with them, I am thankful for that at least, I have some closure while some have nothing. My heart breaks for those who are told there was no reason or that they had a perfectly normal baby, I don't know how I would cope knowing that my baby was perfect in every way except that he isn't here with us.
It's been nearly 6 months from that day, I have moved forward, but I have not moved on, some days feel harder than the first few days, some days I just think of all the things I should be expierencing with my first born, but now I just daydream and try and forget the pain of never holding my son in my arms.
It is important to know that there is support in place for families who are grieving. The following organisations may be of assistance:
(from their website) Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature births, or have children with serious and terminal illnesses. Heartfelt is dedicated to providing this gift to families in a caring, compassionate manner. All services are provided free of charge.
CarlyMarie is a writer and artist, she knows the pain of loss and creates beautiful memories for people to cherish. She also puts together and distributes memory boxes to hospitals in WA.
Sids and Kids have a 24 hour Bereavement Support line 1300 308 307.