Mother’s Day: Without My Baby And Without My Mum - Courtney

My mum passed away in 2004, from a rare condition called MSA. I was 18 years old. I thought that would be the hardest thing I would ever have to go through in my lifetime. But unfortunately it wasn’t.

At the end of 2014, my partner and I found out that we were expecting, we were so happy.

My pregnancy was straight forward, a bit of morning sickness early on but nothing serious. Our 13 week scan was great, as was our 20 week scan. We also had a number of blood tests that came back fine. We found out we were expecting a baby boy. Because I was relatively young, and everything seemed to be going well, our doctors didn’t see the need for any further scans or tests after 20 weeks. I made sure I was super healthy during my pregnancy. I did everything by the book. No alcohol, no coffee etc.

We gave birth, at 39 weeks, on July 14, 2015, a day before my birthday.

Cooper was the most beautiful thing we had ever seen.

And even straight after birth we were told he was fine.

Things took a turn for the worst later that day. Cooper was breathing heavily, and one of the nurses noticed, and took him to the nursery to be checked.

And so began the worst few days of our lives.

That night we were told there might be something wrong with Cooper’s heart, he would need to be transferred for further tests. He nearly didn’t survive the trip from the Gold Coast to Brisbane.

The following day, on my birthday, we were told that it wasn’t his heart. He had a rare condition, called Vein of Galen (genetic, but completely unrelated to what my mum passed away from). A rare condition, which affects approximately 1 in 3 million babies and is rarely detected during pregnancy unless you have a scan after 30 weeks. Some cases can be operated on but Cooper’s was too severe. He was immediately put on life support.

The next five days were a blur, we asked ourselves so many questions, how could this be happening? Why was this happening? Was it my fault? Would we be able to have another baby?

Cooper survived another night with us by his side. And passed away on the morning of July 19.  Our first born baby, the love of our lives, was gone. And there was nothing we could do.

For the next 6 months, everything hurt. The pain was emotional and physical.

As if the grief wasn’t hard enough, your body is also telling you that you should be looking after a baby. My milk came in and I had to take tablets to make it stop. My post baby body was a constant reminder that I had given birth, but had no baby. We had to pack up a beautiful nursery that we’d spent months setting up. We had to visit the funeral home. And of course we had to make sure all our friends and family knew what had happened.

It was a time when a girl really needed her mother, and I didn’t have her either.

I returned to work a few months later and everyday someone new asked me how my baby was going. I had to explain over and over, usually through tears. In saying that, going back to work was the best thing I could have done. I had somewhere to be everyday and my colleagues were unbelievably supportive.

But the main reason I kept going was thanks to my amazing husband and our families, for them I will be forever grateful.

And of course the thought that one day, we would hopefully have another baby.

We started trying again around 6 months after losing Cooper. The first few months that we didn’t fall pregnant were extremely hard. I wondered if I was ever going to get pregnant again. There were a lot of tears. But finally it happened.

Our second pregnancy was a lot more stressful than our first. We had extra scans and tests, and constantly worried that it was all going to happen again.

It was a long 9 months. But we made it.

On February 17, 2017 we welcomed our beautiful baby girl Zara, the light of our lives.

For a long time I wondered if we would truly ever be happy ever again. But I can now say we are getting there. It’s been tough, but one thing I’ve learnt is the road to motherhood is not easy for so many people. And sometimes it’s just not fair.

Last year Mother’s Day was terrible. How do you celebrate a day, when you don’t have your mum or your baby? I just cried and cried.

This year will be different though. This year I will celebrate Mother’s Day with my beautiful baby girl, and we will remember her amazing brother and my mum, who were both taken from us far too soon.

Courtney

If you require support after reading this blog please contact 

Sands on 13 000 72637

Courtney Zagel

Gold Coast Journalist.30 years old Wife to Leon. Mother of two, Cooper (passed away in 2015 at 5 days old) and Zara (now 10 weeks old)

Six Years Is A Long Time by Dani

It has been six years since precious Jasper died.  In this blog, Dani shares with us her memories of what has occurred since Jasper died and her memories of the time surrounding his death.

Photo taken and copyrighted to Dani Hall

Every once in awhile, I remember how long it’s been. Days like today (18th November) – his 6^th birthday, particularly mark the passing of time. Time really passes. It is not something we imagine. But the passing of time is both objective time and subjective time. But there is also personal time, which is measured in your relationship to memory.

When I stop to think about it – really think – so much has happened since his passing. We lost our house, went through fertility clinics to try and discover my infertility problems, we had a rainbow, we raised money for a camera kit for Heartfelt, I’ve lost 3 nephews – one to SIDS and two to prematurity, I’ve been blessed with 4 nieces, helped my mother-in-law find happiness with another partner and watched her get married, gotten a job as a sleep scientist, graduated university with a Bachelor of Justice and currently enrolled to complete a Master of Social Work, volunteered online with SANDS, enrolled my rainbow in prep, took a family road trip, watched Gangad pass, had two sisters get married, my rainbow had surgery and broke his leg, watched many friends get married and have babies and I’ve gotten 3 tattoos. And that’s just what I can think of, off the top of my head.

But then there’s the other side of time. Where it seems like it hasn’t passed at all. Where I think about his birth – rushing for an emergency caesarean and his admittance to the NICU. The strong yearning to see my baby – to hear him cry. The fond memory that we thought he was a girl right up until the moment he was born. The name we had picked out for him – Taryn – until he was born and we had to think of his name on the spot. The sheer relief that flooded through me when he was born, knowing he would be taken care of. The feeling of my heart plummeting when they told me to make the choice to continue care or remove him from life support. The knowledge that I had seen him only a few hours earlier and he was alive – kicking, responding to my touch – and knowing I’d never see that again. And in there hazily, the memory of my dad holding his oldest grandson, saying goodbye, telling him how proud he was of him. Getting wheeled back to my room after kissing him goodbye, knowing I’d never see him again. The sheer pain in my heart – hurting to move – hurting to breathe. The guilt for removing support. Preparing a cremation and funeral. Something no parent should have to do.

The overwhelming support and the text from my dad I will never forget “Dani, you should be very proud for creating a life and trying to give him the best chance possible – not many people can do that”. The foggy memories of loved ones visiting – and trying – really trying to connect but not being able to. The loss of friends.

The memories are right there, as though it all happened yesterday, but it’s been 6 years. 6 years ago we still thought he was a girl. 6 years ago we knew our baby would be born early we just didn't know when. 6 years ago I was still in ignorant bliss that our baby would survive. Little did we know in 24 hours our baby boy (surprise not a girl) would be born at 25+6 weeks and another 10 hours after that we would have to take him off life support and watch him go to heaven in my arms.

Time has taken away a lot of my innocence, given me a lot of grief, taken my son further and further away from me. But it has also given me many happy moments, blessed me with another son, made me who I am today.

“No matter how much time passes, no matter what takes place in the interim, there are some things we can never assign to oblivion, memories we can never rub away.” 

– Hakuri Murakami

Dani

If you require support after reading this blog please contact

Sands on 13 000 72637

Danielle Hall

Wife to Corey and Mumma to two boys: Jasper Rhys in heaven and Harrison Phillip Robert in her arms. Jasper passed away after PPROM at 23 weeks and birth at 26 weeks, surviving for 10 hours in the NICU unit. Currently completing a Master of Social Work with the goal to aid in the safety and protection of all children, because all children deserve to feel safe and loved.

Levi's Story.....

Adin shares her story about the birth and death of her precious son, Levi.

"Just recently I read an excerpt contributed by Deborah L. Davis PhD from 
the book "Never Forgotten".  She wrote "it may help you to remember
that you were in the impossible position of having to 
choose between terrible and horrible.” I have a profound connection 
with this statement, and it provides me with bittersweet comfort."

I was always afraid of becoming a mother because I was scared my baby might die.

There wasn't one thing that particularly scared me. I was scared of the “what if’s?” In my head I resolved to the fact that every prospective parent must worry at some point about these things. It comforted me to know that over one hundred billion people have ever been born, and of the seven billion on the planet right now, the average life expectancy was about 70 years of age. Millions, no, billions of people do this parenting thing every day. So surely I could?

So, I did.

And guess what? My baby died.

Actually, that’s a selfish thing to say.

Our baby died.

My husband lost his baby too.

Our first child, a son, Levi Duxbury Hewat was born on at 4.58pm on Saturday 8 November 2014 at 38 weeks exactly, and was 2.92kg and 49cm of perfection.

Levi died six days later.

Surprisingly, when I fell pregnant the fears I had weren’t really bothering me and we had 38 weeks of joy, excitement and anticipation. I was fortunate to be one of those enviable women with a ‘breezy’ pregnancy (thank you, Levi).  

I was due to finish work on 7 November. Levi had other plans. My membranes ruptured on Thursday 6 November.

We went to the hospital for a check-up that afternoon. It seemed my membranes hadn't ruptured completely, and all was looking OK, so I was given the option to join the queue for an induction or go home to await the natural onset of labour. We chose to wait and get one last good night’s sleep in (Ha! We didn't sleep a wink). We were advised to return to the hospital the following morning if nothing was happening. Apparently the vast majority of women will go into labour naturally, and are likely to give birth within 24 hours of a rupture. I’m one of the minority.

We returned to the hospital on the Friday morning. Again we had the option to join the queue for an induction that day or go home to await the natural onset of labour. This time we chose the induction.

The labour was long and difficult: medical staff struggled to insert the cannula; nine hours after contractions commenced I requested pain relief and it made me vomit (hard to do ‘nicely’ when you’re contracting); several hours later I opted for an epidural. The first attempt resulted in a dural tap, so the anesthetist gave it a second go. A short while after the epidural kicked in there was a prolonged fall in Levi’s heart rate and I was being prepped for an emergency caesarean. Levi’s heart rate recovered, and labour continued as before. Late into afternoon I was able to start pushing. Over an hour later the doctor was called to perform a vacuum assisted delivery. Around fifteen minutes later, our Levi was born.

After the birth, Levi was administered oxygen. Eventually, he was placed on my chest for a few minutes. He had big, dark eyes, my lips, and his Dad’s dimple. He is the cutest baby I have ever seen. Because Levi was administered oxygen, he was going to the special care nursery for observation and I was going into the theatre room to receive a blood patch following the dural puncture.

While Levi was in the SCN staff saw him have a seizure so he was moved to the Neonatal Critical Care Unit and was being monitored by an EEG machine. The second time I saw my son he was covered in wires. He was in an open crib so whilst we were unable to cuddle him we could gently cup his feet or hold his hand. He was to be given an MRI and a lumbar puncture to determine or rule out possible causes of the seizures. Throughout the next 48 hours, my husband and I along with our family members would sit with Levi and wait for updates on his condition. The seizures seemed to have subsided, initial blood tests came back clear, the EEG and the majority of the wires were removed. The lumbar puncture however wasn’t successful and he was still waiting for his MRI.

By the Monday evening, and throughout Tuesday, Levi’s condition was stable, or at least hadn't regressed. In fact on the Tuesday evening, the clinical nurse was going to arrange for us to have a cuddle. The nurse told us to go and have dinner and by the time we finished, she would get him ready for to nurse. In the time it took to have dinner Levi’s condition deteriorated. I can’t recall exactly what happened, but we weren't able to get our cuddle with him that night. They tried another lumbar puncture, but again it was unsuccessful.

The following day was tense, and they were hoping that the MRI would go ahead. The doctors felt that Levi was battling an infection and more seizures were visible. They suspected Levi had E.coli which more than likely meant he would also have meningitis. As such, they began treating him for E.coli and meningitis. That afternoon they took more blood cultures and put Levi back on the EEG machine for some testing before he was finally taken for his MRI.

It was later confirmed that Levi had E.coli and the strand of E.coli he had was resistant to the usual E.coli medication that is prescribed. He would still be treated for meningitis, however they were unable to confirm or rule this out due to the unsuccessful lumbar punctures. A neurologist also confirmed that the lesion on Levi’s brain was the result of a stroke, but they were unable to confirm if it occurred in utero (causing my membranes to rupture), during labour, or was exacerbated by his vacuum delivery.

I was hoping the first time I had to write out Levi’s name was on his birth registration. Instead I was  days into motherhood and filling out his details so he could receive blood, platelet transfusions, further brain testing, and various other interventions. As it would happen, we would sign and pay for his funeral before we would lodge his record of birth.

It was apparent that Levi’s infection was taking over his body. His blood wasn’t clotting properly and the platelet transfusions weren't working. The E.coli, which was septic, was compromising Levi’s organs, and as such he was put on further support. He was being administered a number of medications to combat the infection and seizures, and as a result his body was becoming swollen. The seizures became more apparent, but no one was sure if that was a result of the stroke, or the infection taking over his body, or both.

Just recently I read an excerpt contributed by Deborah L. Davis PhD from the book “Never Forgotten.” She wrote “it may help you to remember that you were in the impossible position of having to choose between terrible and horrible.” I have a profound connection with this statement, and it provides me with bittersweet comfort.

The doctors conceded that Levi was receiving the maximum dosage of medication that his body could handle. His seizures were occurring almost every minute and were distressing to witness, and we was becoming unresponsive to stimuli.

The afternoon of Friday 14 November 2014 my husband and I made the decision to withdraw Levi’s life support.

We had time to notify our immediate families, enabling those who were able, the opportunity to say goodbye (and hello in some cases). The hospital arranged a blessing and we were fortunate to have a volunteer from Heartfelt come and take some photographs.

When the machines were turned off I got to hold Levi for the second time, but my husband got to hold his son for the very first time. We held Levi; kissed Levi; talked to Levi; bathed and dressed Levi (we were terrible at it); and held him some more. We had the opportunity to say good bye and tell him how much we loved him. We are very thankful for that.

Levi had been born, lived, died, and farewelled all before his estimate due date arrived. It’s been almost six months since then. My husband and I have our daily memorial rituals that keep him alive in our hearts and our home. We’ve had help and love from family and friends, and sought help from organisations such as SANDS and SIDS and Kids. We just want to live a life that honours Levi and makes him proud of us.

In a couple of weeks I’ll be running in the 2015 Mother’s Day Classic. When I was pregnant the 8km fun run was my personal ‘benchmark’ event to aim for in my post-natal fitness quest. I was going to push Levi around the course. Exercise has been a big part of my therapy, and as it turns out, Levi’s going to be the one pushing me.  

By Adin  – Levi’s Mum

27 April 2015.

If you require support after reading this blog please contact

Sands on 13 000 72637

Adin Hewat

Adin loves camping, the beach, travelling, quizzes, puns, (bad) dancing, (really bad) karaoke, and shamelessly laughing at her own jokes.  She hates clutter, is scared of dogs, won’t eat fruits touching and struggles to swallow tablets.  Adin is a wife to Adrian and a Mum to Levi who passed away in November 2014 at six days’ of age. She currently lives in Brisbane but supports NSW in the State of Origin

More Sweet than Bitter

Larissa shares again her feelings as she approaches her third Mother's Day without her precious Ariella.

"I know not everyone will feel the sweetness on Mother’s Day and I know it will still be partially bitter for me as I long for Ariella in my arms."

This year will be my third Mother’s Day and it’s the first one I haven’t dreaded. In 2013, Mother’s Day was just three short months after my daughter’s stillbirth and the grief and devastation I felt was raw. It was so raw that I decided I couldn’t face Mother’s Day in any form whatsoever and instead of celebrating, my husband and I spent the weekend away together. The day itself turned out easier than I thought, but the lead up to it was very, very bitter. I didn't feel like I could celebrate without my daughter (nor did I want to do so).

Last year, it was different. My son was born safely four months before Mother’s Day and having him around certainly made the lead up easier. In 2013 I was scared that no one would acknowledge I was a mother because my daughter wasn't with me but I knew no one could deny my motherhood in 2014, considering I had a child in my arms. But the day itself still felt bittersweet. My son’s safe arrival didn’t lessen the pain of Ariella’s death and I still felt the bitterness of her absence on the day. But being able to hold one of my children added a little sweetness to the day.

Recently, as I thought about this coming Mother’s Day, I realised something that I didn't think was possible. This year, it’s more sweet than bitter! I know the day will be hard and I’ll almost certainly shed a tear when we visit Ariella’s grave, but the rawness of the pain is largely gone. It’s not that I won’t miss her (I will) nor is it that I don’t wish she was here (I do), but the sweetness of my memories with her are starting to take over the bitterness of her death. I feel like this year it is easier for me to see my motherhood defined by all of my children, instead of fearing that others will forget my firstborn, the one who made me a mother.

I know not everyone will feel the sweetness on Mother’s Day and I know it will still be partially bitter for me as I long for Ariella in my arms. But I do hope that all of us mothers will somehow find peace this year on what is usually a difficult day.

Larissa

If you require support after reading this blog please contact 

Sands on 13 000 72637

Larissa Genat

Larissa is a wife to Marcus and a mother to two beautiful children – Ariella Jade in Heaven and Levi William in her arms. She loves spaghetti bolognaise and the smell of rain, but neither of them could make her smile when, after a textbook pregnancy, Ariella unexpectedly died at 39 weeks gestation. No reason was ever found for her death. Soon after Ariella’s death Larissa began writing. 

You can find Larissa's posts at:

Deeper Still (www.loveisdeeperstill.blogspot.com)  and on Still Standing Magazine (http://stillstandingmag.com/author/larissa).