Chloe Fay

Posted on Posted in Hydrocephalus, Induction/L&D, Neural Tube Defects, Spina Bifida, Stories

By Zena Mason

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People are silently grieving, too afraid to let people know what’s going on because they are scared of judgment.

To the newly bereaved parent: please know that you’re not alone. I want to share my story of medical termination in Australia.

This was extremely hard to write and share. In a world full of supportive people we have certainly felt alone because it’s so taboo and people are scared to talk about anything to do with the loss of a child. Unfortunately, we live in a world where we as humans are judged for what shoes we wear, what house we live in and whether we like boys or girls, so when we had to make a heart-wrenching choice it became apparent that we would be fearful of what people would think.

The reality is that they are not in our shoes and never will be. Even if you have to take the same path as us, your story will still be different.

Although we wish this would never happen to anyone, the reality is once you get outside the bubble you live in, it’s everywhere. People are silently grieving, too afraid to let people know what’s going on because they are scared of judgment. I’ve met some of the strongest mothers and heard their loss stories: full-term, miscarriages, and medical terminations. It’s appalling the way people treat them—as if their child never existed—just weeks after they went through the toughest of struggles.

It took me almost twelve months to grieve when my puppy (of 15 years) passed. Getting over the loss of a child will not happen in weeks, months or years because you never get over them; they are a part of you forever.

I feel that if we share her story, it may help others. Perhaps someone you know, or your child or grandchild will someday face something similar, and you will be able to say that you knew of people who went through this, and that they survived.

This story is about our daughter Chloe. As I write this, I should be around seven months pregnant, but sadly I am not. In a few weeks, I would be on maternity leave. But instead, we are trying to find our new normal. This story is about 10 weeks of survival, learning how strong your marriage is, courage, loyalty, friendships, love and a $h!t unfair situation. It’s not being posted for you to feel sorry for us—we have done enough of that for ourselves—but more for awareness. It’s to help us in our grieving process because bumping into people in the street that don’t know our story is terrifying.

On the 30th of April, 2016, we should have been welcoming a precious bundle of joy into our lives listening to her cry, changing her nappy, watching her smile and grow. Instead, we will release balloons and blow out candles on a cake on her behalf. We were faced with a decision that we would never wish upon anyone. We planned a funeral when others listened to

We planned a funeral when others listened to their baby’s beautiful cry. We set up a baby room for our little girl and this room remains empty. She was sent to be with the angels at only 21 weeks gestation.

Her name is Chloe Fay Mason she is the daughter of Troy and Zena Mason. Although you can’t see her in our arms, she existed. She was 26cm the same length as a big cordial bottle. She had my nose and the rest of her was her daddy. She had long feet and hands, little specs of blonde hair and she was ours. Made with love! And certainly missed already.

The Scan

On the 10th of December, we went for our 20-week scan (5 months) right on Troy’s birthday. What a cool present this would be to find out if our baby was to be a girl or a boy, right? We’re in the “safe” zone. What could possibly go wrong? The ultrasound technician couldn’t tell us the sex. Though he did mention that the baby yawned and waved at us, he failed to mention why he was paying particular attention to her spine and brain. He was actually silent the whole way through. Little did we know that this was the start of something much bigger.

The ultrasound technician couldn’t tell us the sex. Though he did mention that the baby yawned and waved at us, he failed to mention why he was paying particular attention to her spine and brain. He was actually silent the whole way through. Little did we know that this was the start of something much bigger.

Terrible News

We were surprised when we were called into Mater hospital on the 14th December. They told us we were having a baby girl , then hit us with the information that our little Chloe was not well. She had spina bifida, hydrocephalus, and Chiari malformation (Arnold Chairi 2).

What this basically meant to us, without a doctor’s degree, is she had a lot of spinal fluid on her brain (lemon shaped head). They could see issues with her spine and an open pocket on her back exposing her spinal cord, this pocket normally closes off a few weeks after conception. We were told if she were to survive (they weren’t sure) and make it to full term, she would go straight into the operation theatre at not even a day old. They’d put a permanent stint (shunt) into her brain to drain the fluid build up which she would forever have. She would then undergo an operation to close the opening on her spine to stop her exposed spinal cords from showing and getting infected. This wouldn’t fix the problem, though. The damage already happened when she was at 2-4 weeks gestation. Although some might live with this, their story is not ours, and we’re all not the same.

We walked into that room wanting to find out the sex of the baby and walked out with a heavy heart and what felt like a house sitting on our shoulders. The doctor told us the outlook on her life would be grim. She would be brain dead. She wouldn’t be able to walk. We would be changing nappies for the rest of her life. She would be in a wheelchair. The doctor gave us two chooses 1. medical termination, or 2. we continue on and “if” she makes it full term, we would have support.

I used to think the hardest decision I would have with a child was what school they would go to or whether or not to breastfeed. But choosing whether your child should die or stay alive is by far the hardest!

In a room full of happily expecting pregnant ladies, we waited for the doctor to write up all this information. We were distraught, our brains were going a million miles an hour, and we still had to drive home.

Making the Decision

When we got home we were silent. We had no idea what to do, Googling what we had heard had never seemed so important. Somehow, Troy and I had to come together in the end to be on the same page. I searched spina bifida websites and I found all the fabulous stories of the children who have parts of Chloe’s diagnosis. But what I had to realise is everyone’s stories are different and no one shares the “terrible” stories. What heartache the parents went through, or what the child had to go through. We just hoped the doctors weren’t incorrect.

After many consultations with doctors and lots of tears, we chose to take the pain now so our Chloe didn’t have to. We didn’t want to bring a child into the world just to have her exist without living. Would she even know that we existed? What life would she have? The guilt we live with every day would never be as painful as it would be to watch as she grew but didn’t progress. I’ve been in retirement homes, and I’ve seen young people who can’t fend for themselves. Is this what she would be like?

Chloe’s Birth

A board of doctors had to approve our decision. When they did, I was admitted to the hospital. It was so close to Christmas. After waiting and having contractions after contractions, I had Chloe via L&D the morning of the 19th December (right in between my birthday and Troy’s) with limited pain relief. I felt I needed to take some pain for our little girl. And I will tell you now, the labour stories people gave me when I was pregnant will never scare me now. Nothing can quite prepare you for the birth of your baby, let alone giving birth to a little angel.

When little Chloe was put into our arms we couldn’t celebrate. Her life was over. She didn’t cry, she didn’t move, she was cold, and we were numb. We spent a full day with her, dressed her, gave her kisses because she was our beautiful girl. This would be the last time we would ever see her, and those moments will have to last a lifetime.

She had the obvious signs of her diagnosis: a lemon-shaped malformed skull and the spina bifida sacral lesion on her back. Everything else we were told of would have to wait until the autopsy was done. We can’t get any of those moments back, but we were lucky enough to get precious photos of her from Heartfelt Photography so we can never forget her face. She had family and friends visit her, as well as flowers and cards from beautiful people across the state. Chloe got cuddles from her aunties and uncles and grandma.

Every day afterward, we woke up wishing it was all a big nightmare. I would look down at my tummy and see a belly that was empty. I only recognised her movements after she was no longer in me. If going through labor wasn’t enough, my hormones were so messed up. To make matters worse, the breastmilk decided it might pay a visit.

The First Month

Life sucked completely for the first month after she was born. Even though you have just had a baby, people fail to realise that you should be taking it easy because there is no physical sign of a child. Conversations were awkward because no one knew what to say and everyone looked at me with sad eyes. The simplest of tasks were a big effort. Somedays I felt like a two-year-old chucking a tantrum. I couldn’t have got through with my amazing husband.

Chloe’s autopsy took three weeks. On my birthday, we were asked if they could keep her brain and spine as they were running behind, we told them to take their time in hope it might shed some more light. We never imagined our pregnancy to end this way. After all, no one shares the terrible stories.

Each week was something new. First, we had to find items to have with her for the cremation, visiting her in her itty bitty coffin with all the special effects that grandmas and aunts had provided (photos of her cousins, letters and drawings). Then there was the mail, wth her birth certificate arriving, her ashes, her death certificate, sympathy cards, donations to Bears of Hope, and preparation for her ceremony.

When would all these triggers end?

Follow-Up Appointment

Then it was time to go back to the hospital where we’d gotten our Chloe’s diagnosis, to talk to the doctor about everything that had happened. We were advised that the likelihood of this happening again was very low. I asked questions like I had a doctor appointment prior to trying to get pregnant. They didn’t say anything about my blood. I took my prenatal vitamins prior to conceiving—isn’t this meant to prevent NTDs? We ate well, I lost 20kg, didn’t drink, My husband quit smoking. Why did this happen?

Apparently, 70% of NTDs can be prevented by your pregnancy supplements the other 30% are “just one of those things.” I’ve had my folate and folic acid tested and I had a higher range in my system, which was subjected to nine months of tablets. And now I’ve had to add in 10x the amount through a jar of $5 pills, which we think mothers should just take regardless.

Chloe’s Ceremony

We had a ceremony for Chloe on Australia Day at the place Troy and I got married.We had a balloon to release, but Chloe decided it would be better to go earlier and it was released in the car. Chloe had around 30 people come (more would have) and we had a lovely celebrant say some beautiful things. We had some tables set up with some of her special effects, her Cowboys birth certificate, her pictures, teddies, funeral books and memory jars made just for her. We then spread a small amount of ashes in the ocean and blew bubbles. It was perfect and heartwarming that we had so much support from our amazing friends and family.

Finding Support

The situation we have been in has been very $h!T, Husband and I are stronger than ever, we have learned a lot about true friends and family, the support we have received from the “Facebook world” has been nothing short of amazing even when I’m having tantrums. The messages, the calls, the cards, the flowers, the thoughts and the kind words. The support from our work, the assistance from the hospital and the doctors, makes us feel so lucky and appreciative in a time when “luck” isn’t on our side.

We personally wouldn’t be where we are today without some key people in my life, new and old virtual and real. I’ve met some people from all around the world on support groups for people in this terrible club. In a time when you feel so alone, you start to realise that you are not.

Helping Others

To help my healing, I donated my wedding dress to Angel Gowns to make little angel dresses. I edited photos of other angels and put them into special wall features for their parents. I’ve seen so much pain on these groups, and if I could have any superpower it would be to give everyone’s babies back and let them have them forever! When I hear people in the normal world complaining about something to do with their child it does make me sad. This is because little things like being up late at night to crying, or teething, or fevers is a luxury. In my new world, these things are things that mothers in this “group” would die to have. Hug your children and loved ones tightly and please enjoy these precious moments. All kinds of tragedies strike when we least expect it and life shouldn’t be taken for granted. Don’t complain because people don’t visit—it works both ways. Make the effort. Don’t be stubborn and wait till it’s too late.

Husband went back to work in the new year and I was back at work on the 15th February which was 9 weeks after her birth. Australia is amazing for recognising her birth and allowing me access maternity leave. Had she been 19 weeks instead of 20, we wouldn’t have been so lucky. Which makes me sad. I’ve had the privilege of seeing many beautiful angels at all gestations and I can tell you a baby is a baby as soon as it’s conceived! The emotional turmoil that is left whether for miscarriage, still born, being in NICU or medical termination is huge. But to not be told that they exist prior to 20 weeks is just messed up.

It’s not a lesson

What hurts more is when people use words that make these big events in our lives less significant.Think about what you say to people before you say it. I used to be a big “positive” person. You would hear me say everything happens for a reason, but how can I say that now? Someone in the universe chose to give Chloe a terrible diagnosis, made us go through labour, death, and organizing a funeral so I can learn? I’d rather not have the lesson thanks. What child would you give up to learn a lesson in life?

If you’re still reading, thank you. Chloe’s story will only close if we allow it too, and we won’t. She will always be our first baby girl, our child. Just because she isn’t here doesn’t mean she doesn’t exist. She will be remembered until the day we die. We waited ten years to make a perfect life for her. Little did we know that nothing on the outside could have helped what was going on inside.

We have no regrets with our decision. The only regret we have is not spending time with her in my tummy and worrying about others too much. This year we are being selfish in some
instances and not feeling guilty for it. “Fit your oxygen first, before helping others.”

We ended a very much wanted pregnancy.

We have changed, parts of us are broken, but we’re survivors.