Bruth (Mumoirs abbreviation): Brutal truth
I’ve been telling my bruth about our three losses – BoC, My Baby and Summer – via these Mumoirs blogs since June, so I wanted readers to hear some other voices, to grasp just how far reaching, brave and supportive this baby loss community, truly is.
During a bout of insomnia last week – something I never suffered with until Summer died – I had the idea of asking various bereaved parents about their experience. Firstly, to give you a break from ME, but secondly to use the platform so that we could all learn about some of the other babies who should also be here, and the families who have been left behind. I know how much it means to me, to see my babies’ names spread far and wide, so I wanted to be able to do the same for others. This global community has done so much for me, so I wanted to do something in return.
I put a post on Instagram for 24 hours, asking the @anjuliesmumoirs account followers if they wanted to be involved with a blog and incredibly, a huge number of them said yes. I asked each responder a different question and I’ve collated the replies below.
The vast majority of responses came from complete strangers, so a HUGE THANK YOU goes to everyone below, for getting in touch, engaging with this blog, sharing your thoughts and your children with me. Given the number of contributors, this is a long blog, but it’s an extremely important one. I hope that everyone who reads this, will either learn something or be touched or comforted by the words, just as I have.
This has been a wonderful act of solidarity, bringing me joy in an otherwise difficult week. Our babies are gone, but they are not forgotten. So if you have only one takeaway, let it be this: You are not alone. We have found ourselves in the best-worst club, but we are in it, together. And I, for one, am cheerleading for you.
With all my love and thanks,
Victoria & Joe
Our son’s name: Felix
He died at 15 days old, would be nearly 26 months if he was still alive.
What was the nicest thing someone said or did for you after you lost your baby?
My best friend wrote a song for Felix and came with me to the funeral home and played the song to him. It was a beautiful moment that I will cherish forever. She was the only one to see him alive and after he died, apart from parents.
Carrie & Cory
Our daughter’s name: Madelyn
Age: 5.5 months
What would you like to tell your pre-loss self?
This will be the most gruelling and difficult thing to go through. It will feel like a blur some days and you’ll go through an emotional roller coaster like no other. Yet, through all of it, you’ll surprise yourself with how willing you are to share about losing Madelyn, and you’ll find an amazing community of other loss parents willing and ready to support you, whether it’s 10 miles away or 2,000 miles away. Self-care, self-care, self-care, and be gentle on yourself…so important to maintain. Most of all, try not to compare your grief to others. Everyone grieves differently and what you do is completely valid and it’s okay that it won’t be the same as anyone else!
Agnes & Jeppe
Our son’s name: Elliot
Would have turned 8 months old or still is
What has been an unexpectedly difficult thing about living through baby loss?
Life turns upside down in a split of a second. Our future for that child completely robbed from us. Nothing is the same anymore. Change is constant and when our child died, this change was abrupt. And while we are attempting to navigate our lives, the magnitude of our loss was simply not understood by society. This lack of understanding turned into silence and the wrong responses.
The most isolating thing was the deafening silence despite the statistics. My most wanted and celebrated child has now had to become a hideous thing. He has become the trigger, and even the mention of his name was uncomfortable. I am asked to grieve in secret.
People start to judge how we grieve. And society has a timeline for how long you can grieve and how you should grieve. And as a result, Your circle of friends and family completely changes. The people we have lost after the loss of our son is truly saddening.
Maeve & Eoin
Co Tyrone, Ireland
We have 3 angel babies, we didn’t name them, the last one should have been 8 months now
What reminds you of your baby/babies?
Everything, from when I wake up in the morning. It is the first thing I think about, how I should be getting up to look after a baby, how we should have three. When I see another mother with her baby. There is a reminder of them every day.
Beth & Matt
Our son’s name: Oscar Stephen
Age: Born at 18 weeks 3 days
What’s been an unexpectedly positive thing about living with your loss?
I don’t know if it’s unexpectedly positive, but losing Oscar has just confirmed what a strong relationship I have with my husband. We are very close anyway but I honestly don’t know where I’d be without him, especially the last few months.
I know baby loss is something that unfortunately can cause couples to fall apart and they can’t recover from it, but I definitely feel it has brought us even more together and made us stronger.
I think another unexpected positive from all of this has been able to connect with other amazing people who have unfortunately gone through baby loss as well. As horrible as it is, it is very comforting to be able to speak to people that know exactly how you feel and what is going on in your head.
Lennon & Shane
Trinidad and Tobago
Our son’s name: Thais
Thais died in 2017. We have one living child, Chinasa aged 1 year old.
Do you already or do you plan to remember your child on certain dates every year?
Yes, I remember Thais on 19th May, the day he died. I also keep his memory alive by donating small boxes I call them angel memory box to iyr sole hospital on the island for mothers having a loss from 24 weeks…that’s when baby died. And I donate them in the name of Touched by Thais Network.
There’s no support group or anything on the island. It’s a hush hush topic. People are uncomfortable and you get pushed indoors with this topic.
I asked another loss mommy to join me and we started a public wave of light this year for the first time in our country. We got support from the hospital staff, especially the midwives. Resources are limited so bringing awareness and having a support group will have to be a private venture I believe.
Sharron & Pete
Our daughter’s name: Emma
Age: Emma died when I was 35+1 weeks pregnant. She was born at 35+5 on 29.01.19
What’s something that others could do to help you (either now or when your baby died)?
Talk to us. Acknowledge our baby. I gave birth to our beautiful daughter, 6lb 12oz. A perfect baby girl. I became a mum, a bereaved mum yes, still a mum. I am as proud of our baby as any mummy is and I want to talk about her. The silence is painful.
By talking about our baby, you are not reminding me that she died, I live with the heart wrenching pain every second. I never forget. By talking to us about our baby you are acknowledging that she lived. It’s the greatest gift you could give the bereaved mother.
Julie & Chris
Our son’s name: Will
He was just a few hours old when he died
What do you wish people knew about baby loss?
That it’s often not an isolated event. It’s not something you’ll ‘get over’.
Many people like us experience baby loss after years of trying, years of procedures, fertility treatment and disappointments. And for stories like this there isn’t always a happy ending, a rainbow baby, or even the opportunity to just try again. Sometimes this is where it ends.
The grief felt is from losing this only chance of being a parent, losing their only child, pain from a difficult journey and one with little hope for the future.
Aline & Paul
Our angels names are Gabriel, Thomas, Catherine, Seraphim and Angel.
Seraphim was 1.5 hours when he passed, while I miscarried his siblings. I am yet to bring a baby home, I do however, carry my babies in my heart.
Has your view on miscarriage/baby loss changed, now that you’ve been through it?
When I was 22 my mum had a miscarriage and I was so concerned about my mum’s physical pain that I never thought about her emotional pain – something I regret greatly.
Also, two years ago my close friend lost her daughter late in her pregnancy and I didn’t know how to be there for her. I was scared to ask about her daughter as I didn’t want to upset her, but after we lost our beautiful Seraphim I realised the one thing I should have done is acknowledged my friend’s daughter, Lucy, all the time. This is something my friend does with me and it means the world to have your baby recognised.
My heart breaks so much more when I read or hear about someone’s baby loss, because I can relate. Our stories and journeys may be different but we are baby angel mums together.
Laura & Chris
Our babies: 2 living children and 3 miscarriages
What does baby loss awareness mean to you?
A society in which you don’t have to fend off ‘the comments’ as soon as you share your miscarriage news with friends and family.
Where the possibility of going to a scan and being told there’s no heartbeat is something everyone is aware of.
A place where it isn’t considered foolish to share your hopes and dreams for your child pre 12 weeks.
A movement of strong women, their partners and support networks, hoping to change all of this for the women who come after them.
Kieran & Dylan
Our son’s name: Beckett
What do you miss the most about your baby / being pregnant?
I miss feeling him kick me, tucked safely in my belly. I miss the excitement I felt to meet him; to find out if he’d have my nose or his daddy’s eyes, and what colour his hair would be. I miss the calmness I felt when he was in my arms, settling in as if he was a part of me that I never knew was missing. I miss the life that we had planned to have with him. The milestones, the holidays, the birthdays, the mundane every day activities. I miss Beckett. Every minute of every day.
Michaela & Jonathan
Our son’s name: Zachary
Age: He would be 1 now
Have your friendships been affected by baby loss?
My friendships have definitely been affected by the loss of our son. Baby loss is still so taboo in our society and so many people didn’t know what to say to us. Eyes would physically avoid us in public places when they were met with our pain and deep grief.
It isn’t all doom and gloom though, some of our friendships changed for the better. True friendship is like gold dust in a season of grief. The friends that I have made and the friendships that have strengthened are beautiful and are genuinely like family to us. I’ve learned to hold the right people close.
Leah & Tyler
South Carolina, USA
Our son’s name: Eliot Kian
He would be 15 months old now
What keepsakes do you have of your child/pregnancy?
I will always have the blanket I made him, his hospital clothes, and the newborn outfit we planned to bring him home in. I was terrified to buy much for him, but I over did it buying maternity things for me. Stretch mark oil for my itchy skin that I still have for some ludicrous reason. Mostly I bought books. Tons of children’s books. Both mine and Ty’s favorites and some new ones, too. Like Feminism for Boys. It was so important to me that he had the opportunity to develop a love of reading, language, and of course other humans. I think I believed stupidly that someday I would get rid of these things or use them for another baby if that was ever a possibility. A silly notion to me now. They are Eliot’s things.
Mia-Rose & Josh
Our child’s name would’ve been Elijah/Eli
Age: 10 weeks
How and you and your partner doing at the moment, do people ever ask after him?
My partner and I are struggling mentally at the moment. It is still early days. We found out that we had lost our baby on the 8th September. I proceeded to go through the most horrific and painful process I’ve ever been through, just 2 days later, from home. Josh seems pretty scarred from it, since I did actually “give birth” to the sac and a very, very clear view of our baby inside it, who was no longer with us.
Nobody ever asks how my partner is doing. It first brought him to tears, about nobody asking, when we got back home from the scan. I understand fully that a man suffers with you, they have lost their baby too. They just don’t go through the physical pain. The future he saw happening in just months, being stripped from him. We comfort and help each other every day. The entire loss and experience has made us stronger as a couple. We can’t wait to try again.
One living child, one miscarriage at 12 weeks
How have you felt about being around other children since your loss?
I found it quite ironic that this was the question that came my way since my job is a nursery teacher so every day I see fifty 3 year olds. So in some ways I had to get used to being around children very quickly when I went back to work after having a miscarriage. And they are amazing little people. But as they are nursery children it seems to be that many of the mums are pregnant. And you have to plaster on a happy face and wish them congratulations and politely ask where they are up to. Then you have the children getting excited about having a new baby. And you have to talk with them while hiding the fact that you’re so jealous. Jealous of the pregnant mums who are sailing through their 9 months. Jealous of the children who are excited to be having a new brother or sister. (While never wanting anyone else to go through what you’ve been through. And wishing you were having the ‘easy’ experience they are having.)
Whereas for me I feel like I failed when I had a miscarriage. And I failed to give my little boy a brother or sister. So while outwardly I love my job and I am happy around children every day, inwardly it’s hard not to just hate (hate is maybe too strong, begrudge maybe) begrudge them a little bit for everything they have but I don’t.
Steffanie & Francisco
Our daughter’s name: Juniper Lynn Ochoa
Stillborn at 39 weeks 4 days
What has surprised you the most since since your loss?
What has surprised me the most is how often your grief changes and fluctuates. First few months after Juni died I just felt like I was floating. The months we had to wait to try again I felt frustration, sadness, anger and became depressed. Every day is different. Every minute is different. But what doesn’t change is our love for our daughter, we continue to love her so so hard and we honor her every day we take a breath!
What do you now know, that you wish you knew before your losses?
Can I just say “you”, Anj? I think I also wish I knew how fragile pregnancy could be. I’m an anxious person but even I didn’t think it would happen to me. I saw a stick and believed I would have a baby. Maybe I won’t believe I’m having a baby until I see it in front of my eyes.
Natalie & Jason
3 pregnancies (1 twins), no living children
Do you agree with this statement: “I’ve lost more than my baby?”
I didn’t just lose my babies. I lost the future I pictured us heading into and have had to work hard to adapt to new perspectives. This part has brought good things with it for me too in all honesty. But the uncertainties and sadness over the loss of believing we will have a family is huge.
I’ve lost the innocence and excitement around being pregnant and believing it will work out one day.
I’ve lost the ability to be the person I want to be to family and friends who are pregnant now. And that carries a lot of guilt with it.
I’ve lost career progression. I don’t put my career above family but it’s an important part of my identity and the thing we spend so much of our time doing. I’ve had so much time off and mental health difficulties I haven’t grown in my work as I would have otherwise.
I lost confidence.
Francesca & Scott
Our child’s name: Isaac (angel baby)
What have been your coping mechanisms for dealing with your loss?
It’s difficult, I find talking about it with friends or family makes it easier so it’s not so much as a taboo subject. I also find gardening or sewing really therapeutic as you’re growing or making something beautiful from nothing. It’s not something that will ever go away, I find there are bad days where you can’t seem to get away from babies and pushchairs and it’s like a train hits you, but realising not everyday is a bad day is very important.
Felicia & Val
Our daughter’s name: Isabela Rose
Age: Forever 22 weeks gestation/ 1 hour and 45 minutes old
Is there a special place you would have liked to have taken you baby?
Ideally, bringing Isabela home to her nursery that we painstakingly renovated and decorated would have made me the happiest Mama in the world. But also, I would have loved to take my baby girl to my in-law’s Christmas Day celebration. Imagining my daughter playing with all of her cousins, and celebrating the holiday with our big family makes my heart squeeze. When I asked my husband this question, he said he would have loved to take Izzy to Disney and experience it through her eyes.
Child’s name/ages: I only named the first baby. I named him Gabriel. My husband did not want to name him and didn’t want to think about it so I’m sure he doesn’t remember the name. Gabriel would be 9 next month. I couldn’t name the rest of our babies. There were 3 of them (so 4 babies in total) and they would be 6, 5 and 4. We don’t have any children and have been ttc for nearly 10 years.
How have you felt about pregnancy announcements since your losses?
I’m laughing because there have been so many and my reaction is so different.
I always wonder why God has left me out and asked myself what I’ve done to deserve this. For the most part I’m fine with pregnancy announcements and really happy for couples expecting. But most people tell me by phone which makes it easier.
It has been hardest with my closest friends. They know I’ve been struggling but forget about sensitivity. Tell me face to face without warning & show a scan without a warning so no opportunity to process.
What I find difficult are baby showers or being around pregnant friends when other people coo, get excited, feel their belly’s and talk about miracle conceptions. I’d rather not be there. I hate going to kids parties now because it’s so painful. At one kids party they decided to have a group prayer for everyone who had children or were expecting children. It was so unexpected and absolutely awful. A huge kick in the teeth as we were excluded from this prayer.
What will you never forget about your experience with baby loss and trying to conceive (TTC)?
I will never forget how alone I felt. I felt so isolated and alienated. People tried to console me and tell me off/correct my behaviour/advise me. Mostly it was well intended and from people who deeply cared for me, their hearts were breaking seeing me so sad but it’s still heartbreaking to hear their comments. Some people told me it was god’s will/I didn’t pray enough, I did too much or not enough of xyz, it’s my kismet etc etc. I feel traumatised by the loss, having to hear these comments, having to console people for their lack of grandchildren etc and the pity that my husband received for having such an inadequate life, my mother-in-law even asked us to move out of the joint family home as we did not deserve to live with her as we had not given her grandchildren and so that our bad luck would not rub off onto her other son and daughter-in- law.
TTC is stressful as each negative test and period brings its own sadness but also drowns me with feelings of inadequacy for others as well as not being able to fulfil my own motherhood journey. I feel disconnected from my beloved family members and husband, even if they are not saying anything, the ghosts of previous words echo across my empty arms and cut through my heart. Maybe it’s mostly in my mind…. maybe everyone else had already forgotten the pain (it’s not theirs to remember) but it’s just a talking point. It’s lonely.
Lisa & Jason
Long Island, USA
Our daughter’s name: Hope
Age: 12 weeks
Will having a rainbow baby, make up for what’s gone before?
We lost our girl Hope at 12 weeks. I went in for my scan thinking everything was okay, that I was in the clear and heard those devastating words “I’m sorry Lisa, there’s no heartbeat. I need to call the doctor.” 2 days later I was booked for a D&C and we had to say goodbye to our baby girl. We found out later that she had down syndrome and her little heart just wasn’t strong enough to keep beating.
This is an interesting question as I find myself 5 weeks pregnant, 3 months after we had to say goodbye. It was my first cycle which was completely surprising considering it’s always taken me years to get pregnant.
The answer is no. This pregnancy will never make up for or replace Hope. They’re two separate children and she will forever be in my heart. I still find myself in the waves of grief, the loss is so intense at times and I get so scared that I’m going to hear those terrible words again. But then there are other days where I’m completely overjoyed and filled with hope and optimism. I know my baby girl is watching over us. I feel her presence, a few days before I found out I was pregnant I saw two pink lines running across the sky. I didn’t think much of it at the time but I turn to that moment every time I get fearful or anxious and know that she’s guiding us.
It’s such an interesting dichotomy of feelings. There’s hope and worry, happiness and sadness, joy and grief all wrapped into one. But regardless of what happens, this baby will never replace the one I lost. And I can’t see any future babies replacing any future losses; although I’m praying beyond praying that I never ever ever have to go through this again because it freaking sucks.
Hannah & Ashley
Our son’s name: Asher
Does living with loss get any easier?
I believe living with loss gets alot easier with time. For me I have to learnt to live with loss rather then continue to battle against it otherwise I will not be the partner, parent and friend I wish to be. I don’t want the loss to turn me bitter, loss is a part of life, there’s nothing we can do to change it so we have to deal with it, however just because the loss gets easier to live with, does not take away from the pain that I felt in that period of life, I can go back and relive it any time and it feels just as raw. I have had 3 baby loss experiences and each one I have felt and coped differently, with my second loss (Feb 2020) it wasn’t until I was pregnant and past the due date of that baby I was able to accept the loss and let the pain go and I’m currently going through my third loss (Sep 2020) and everything feels so much more raw. This loss was different as it was TFMR so I’m battling the loss of a baby against my guilt of making the choice to do so.
I will always remember the loss and access the pain from it but I have to live with my practical head and be kind to myself.
Our daughter’s name: Ruby
She would be 2 years old
What has your medical experience been like, from a financial perspective?
Two years later… our medical bills from October 2018 are FINALLY paid off. No more waiting for the statements in the mail… logging online to see “Hello Ruby, your payments are due the 19th”. Finally, no more waiting on hold for the billing department, to sort out improper charges. No more back and forth with the insurance company. No more bills sent to collections because the charges were coded as “Baby R.” instead of “Ruby R.”. Can I really stop crying to strangers on the phone? Finally. And, now what?
Do you feel your baby loss experience has changed you as a person, for better or for worse?
I am without a doubt a different “Lucy” to the one who so innocently started trying to have a family six years ago. Trying, failing to conceive, and losing three of our much loved and longed for babies has been the hardest experience of my life, one that I know I will carry with me for the rest of my life. There isn’t a day that goes by where I don’t think of the three babies we lost and the what could of beens. I have lost my innocence, it’s been replaced with fear and my tendency to go to the worst case scenario has been heightened – when the worst has happened it’s difficult to imagine anything but the worst happening again.
That said I would say it has changed me for the better – I wouldn’t wish the loss of a baby on anyone and I would do anything to hold those babies in my aching arms. But I have been shown an inner strength I never knew I had. I’ve become more conscious of those around me and of myself. I’ve become more empathetic and have found my vocation in life – a need to ensure other women going through loss don’t feel as alone & isolated as I did.
I needed to put my grief into something positive and so I created a Running & Yoga Club for women who have experienced baby loss and infertility. Something Lucy of six years ago would never have had the confidence to do. I’ve also learnt through the amazing friends I have made through Instagram that Rainbow’s don’t necessarily have to mean babies, they can also be the moments that bring you joy and happiness and glimmers of light after the darkness.
Rhi & Chris
Our children’s names: Dylan and Arlo who died, Finlay and Elijah who lived.
Ages: D&A would be 4.5 years old, Finlay is 3.5yrs and Elijah is 13 months.
What has your baby loss journey taught you?
So very many things. That I’m stronger than I give myself credit for, that I should be kinder to myself (especially when I’m having a dark day), that I can survive anything, but that to really live and get happiness from life again after loss, takes work. I need people to talk to, but I don’t really like talking on the phone, I prefer being able to take my time and ponder a response via text or to be face to face with someone and be able to gain strength from a hand hold or cuddle. That every experience of baby loss counts (I don’t think I understood this before), and that it’s important to me to not distinguish between my loss of twins at the 32 week mark, and someone who loses their baby before they ever get to see or hear a heartbeat.
That grief isn’t linear, and it makes very little sense to you or to those around you, and that it is ok to acknowledge that. It’s ok to have bad days years and years down the line, and it’s ok to have happy ones moments after your loss.
Keeping busy can be helpful, but hiding under a duvet is sometimes necessary and you should give yourself that space if you need it.
Most of all, your loved ones want to be there for you, but won’t always get the words right, try not to hold it against them (it’s hard, I am still bitter about something my mum said and now I’m grappling with that bitterness alongside my grief over her recent death too). They love you, try and guide them with what you find helps or doesn’t help, and let them try to help you, even if it doesn’t always tick the right box.
Victoria & John
We never decided on a name, but in my mind, I refer to them as Robin and Alex. (Our first baby was a girl but my husband didn’t want to know the gender so I picked genderless names). First baby would now be 8 months, and second one would have been born this December.
What would you like the world to know about your baby/loss?
I wish people knew how hard it is and how you’ll never really okay after a traumatic event like this one. That no matter how far along you were, they were babies to you.
Sure, you’ll have days where you’ll be laughing and where it will slip your mind for a minute but deep down, you’ll always carry that grief and everything could trigger you to feel this immense pain. So I would like for people to try to be caring and to never assume that you’ll go back to who you were. This doesn’t mean that we’ll never be happy for others who get pregnant or happy to see other people’s babies, only that they might want to be careful about what they say and how.
Mary & Adam
Our son’s name: Joseph
What item reminds you most of your child?
Dinosaurs as we loved dinosaurs for him from when he was a bump.
Our daughter’s name: Violet
Stillborn at 30 weeks, 14 months ago
Who has been the biggest support to you during your loss? And has any support come in unexpected forms?
My friends and my partner were incredible sources of support when we lost our baby, Violet, stillborn at 30 weeks. We had the slight advantage of knowing what was to come, so one of my best friends arranged to come stay with my boyfriend and I for a couple days when we got home from the hospital to take care of cooking and cleaning and clear all duties off our plates so we could just rest and mourn. We had a few friends literally show up; bringing meals, doing some cleaning, sending gifts, cards, and flowers. Actions really do speak far louder than words in these cases. Of course there were people who offered help as “let me know what I can do” but truthfully that’s not as helpful as they think. When you’re that deep in mourning, having to think of a task, request it, and arrange a time is just never going to happen. It’s more of a chore than help. “Thoughts and prayers” is now a bit of a cultural joke and with good reason. It’s literally the least you can do. If you want to help someone in mourning, pick a task and just do it. Especially because knowing what to say is so difficult and fraught with landmines. Drop off a meal, a treat, take their dog for a walk. Those are the things I’ll never forget.
Health care in Canada is remarkable and support was also very strong in this arena. I was provided with a few support resources such as counselling and group sessions (PAIL), all of which was free, and while I attended a group session, it wasn’t for me. I found “the rules” of group therapy an impediment to a normal, two-way, empathetic conversation. The doctors and nurses in the hospital were incredible, though. We were referred to a top geneticist during my pregnancy when we discovered something was wrong, and he is the kindest, sweetest, most empathetic man. He walked us through the diagnosis very compassionately and thoroughly, visited me in the hospital after, and followed up with us and will guide us through any future pregnancies. My GP also gave me her cell number, called me numerous times to check in, sent a card and a gift, and made a donation in Violet’s name to a children’s hospital. Through all of it, we felt very heard, very important, and very loved.
We are so fortunate to live in Canada, so cost was never a burden. Everything from (multiple) hospital stays, delivery, specialist appointments, medications, aftercare, a D&C a few weeks later, and almost all funeral home expenses were covered. We paid a small fee (about $150) for cremation costs, but that was it. If we had held a formal funeral, that would have incurred costs, but we opted to not. Not because of cost but because we wanted to mourn and remember privately. No one knew her like we did. I did decide to get a doula who specializes in stillbirth to be present which cost $800. This isn’t covered under Canadian health care, but it was optional and very worth it. I can’t imagine being stuck with massive hospital bills after going through such a debilitating loss and my heart goes out to families who have to deal with this. That’s just another injustice compounded with what they’re already dealing with.
Nicola & Johann
What has your medical experience been like?
I have had 3 miscarriages in the last 18 months, all of them different
I bled from the moment I got a positive test. At 5 weeks pregnant I went to the EPU looking for answers only to be laughed at by the doctor. “Everyone wants to know” he said. I had a blood test and was advised to call for the results. When I phoned I was told results couldn’t be given over the phone.
I returned to the EPU a week later for a scan. I bled all over the table. The sonogropher could see a sac but no reason for the bleeding. I was taken to a room where a box of tissues and leaflets on miscarriage awaited. It was so confusing. Was I was miscarrying?! I was invited to return in 10 days for another scan.
I was still bleeding however the scan confirmed I was 7 weeks pregnant. Still no reason for the bleeding.
I was scanned at 10 weeks. I was still bleeding but no reason for the bleeding.
I was scanned at 12 weeks. I was still bleeding. After some pressing, the sonogropher reluctantly scanned me internally and finally, there was something, a mass.
I was referred to the FMU where every inch of the baby was scanned. They asked me if anyone had physically examined me. When I told them no they were shocked. They examined me and it was obvious right away that it was a fibroid.
I was referred to have it removed. I waited all day for my surgery only to be sent home. I returned the following week. They tried to send me home as they hadn’t booked me in. My husband argued and fortunately I was seen. The fibroid was 2 inches! The surgeon couldn’t believe 1) the size of it and 2) it had been missed so many times!
Two weeks after the surgery I had a follow up scan. Everything seemed fine. A week after that, at 15 weeks pregnant, I went to A&E with severe pain across my lower abdomen. I was miscarrying. I passed the baby naturally in the hospital and was sent home.
Weeks later I started bleeding really heavily. I went to the EPU who sent me home with antibiotics. I lost so much blood I fainted and had to be rushed to hospital in an ambulance. I’d lost over 2 litres of blood. After an overnight stay the doctors decided I should have a D+C.
I should say the paramedics were wonderful. However, my experience with the EPU and the hospital was traumatising. When I had to go back the second time I was terrified but fortunately it was over quicker than with the first. With my 3rd miscarriage, a chemical pregnancy, I rang the EPU and was told they would call me back, they never called.
Alisha & Owen
Armagh, Northern Ireland
Our Son’s name: Lochlann Quinn
Born at 41+2 gestation 25/12/19
How has your baby loss journey changed you?
I find it hard to put into words how my baby loss journey has changed me. It is very much still raw, it hasn’t been a year yet from when I lost Lochlann, and I am still learning how to live this life after loss and still getting to know this new person I have become. One thing I do know for sure is that the old me is gone, in some ways that makes me sad, but in other ways that’s ok, because the old me didn’t know what it was like to love and cherish something so precious.
The old me was very niave, and things that seemed of importance before are meaningless now. I have less tolerance for silly drama. I’ve learned that I need to start looking after myself more instead of worrying too much about everyone else. Of course I still care about the people around me, my loss does not make their problems any less relevant, and I still want to be there for the people I love, but the silly little things that some people consider “problems” I have no tolerance for and they are not my problems to carry on top of my own, I will no longer be the “agony aunt”.
My baby loss journey has changed me in so many ways, some positive and some negative, but I will refuse to let that define me, I will continue to work on the negatives and build on to the positives, letting them carve me into the new person I am becoming.
Our child’s name: Reggie
Age: 12 weeks
Have you taken any positives from this difficult experience?
After 2 perfectly healthy children I never even considered that when I skipped into my scan that anything would be wrong. My partner waited outside due to COVID and inside the room, I was met with darkness and still, his heartbeat was slow and intermittent and we were told to wait a week to “see what happened”. We were devastated and time stood still.
Our home was already full of baby clothes, we were ready for our baby so early because he was so desperately wanted after a long time trying. I continued to grow, my symptoms persisted and I was sure he would make it into our arms. At the next scan our worst fears were confirmed and he had left us.
Feeling utterly robbed I was denied a surgical procedure at the hospital and only offered a vacuum procedure or to take 4 tablets at home. Desperately wanting to hold onto my boy, I took the tablets at home and wished it would start naturally.
It didn’t. I took the 4 pills and headed into the worst 24 hours of my entire life. I bled more than I thought possible, it was a medical contraction for 24 hours.
I screamed in pain, my husband carrying me from the bed to the bathroom when the bleeding was soaking through. Pad after pad, towel after towel. I passed out twice from blood loss and exhaustion. I have a blood condition which made this whole situation terrifying and so dangerous.
I was not expecting any of this as I was told by the medical professionals that it would be a “heavy period”. The hospital refused to see us when my husband called and insisted it was “normal”!
The pain subsided after 24 hours and I was able to drink water and sleep, I was broken by this point we both were. A week later I was still in pain, but again was assured that this was normal.
When going to the toilet I had the sudden overwhelming feeling to push and out came our baby. A week later. After being promised it would be over in 24 hours.
We have been left traumatised, haunted by this experience and the lack of care from the people we trusted to look after us. I am still off work on sick and heading into my 3rd month of intense therapy.
The only positive I have is that I survived, and that Reggie was ours even for a tiny amount of time. I brought him into this world and loved him so dearly no amount of pain could ever change that.
Claudia & Sean
Our daughter’s name: Charlie
Age: 25 weeks
How did you feel about baby loss awareness week this year?
Baby loss awareness week was like living two lives. On my baby loss account I tried supporting and cheering up all mummy’s sharing their stories and their babies and spread a bit of happiness and smiles. You see, it feels a bit like asking the tired warrior to wield the sword again and again. So I have to say, although I was involved and shared posts and graphics, I wasn’t very outspoken.
However, I felt like on my personal account I had to be. Because those are the people that need to hear. That need to spare a moment to think about baby loss and the implications it has on their friends, family and for themselves. On there I did a full on daily post.
Day 1 I posted about how #blaw started. That Ronald Reagan institutionalised this month and week as a dedicated awareness time.
Day 2 was about grief and support and the charities that create a safe space for us and the research and awareness work they do.
Day 3 was about the baby loss community. I shared my thoughts on it and how different the support is from friends and family (politely) that have never experienced this. I also posted all graphics, art, keepsakes people have gifted me from this community (funnily enough I got some from family and friends after seeing the impact of this. please note it is not about the material things, it’s about the moment you spare thinking of me and my baby).
Day 4 was a big one and one I got most reactions to… what you shouldn’t say to a grieving friend. Bringing to their attention how some language minimises our loss, and makes us feel like we failed or are ungrateful for what we already have. I think this one struck a nerve for a lot of people. Which is good. I also made a point of explaining that I too had said some of these things, even on my early days when telling people what happened – at least it wasn’t full term. Maybe was for the best. Maybe the baby wouldn’t have a good healthy life… I think this was a turning point for the people in my life.
Day 5 was about what you could do for a loss parent. I started by explaining that we have no freaking clue of what we need, so everything I write is personal and in hindsight and things I felt and struggled with. So little things: learning the baby’s name and use it. Ask about the baby. Acknowledging and supporting…. bring food, if they have more children give the parents a night off… those kinds of things. This also got some reactions.
Day 6 was about gratitude. And love. Encouraged everyone to join in on the wave of light. Thanked everyone for their words, kindness, love and support. Shared how much we had raised for charity, talked about the load of secondary losses from your baby dying.
Day 7 was the wave of light, which was lovely. I had friends whose children made drawings, lit candles and love was overflowing.
The post was actually about Charlie (which for me was big). I shared about her. I shared her hand prints and foot prints. I shared my love for her. I shared Sean’s love and how we miss her. I also talked about our love – because that is also important.
All this week I was on a good streak. You know, that you can talk for hours with love and no knot in your throat or tears. I felt I reached people while educating them. I had apologies for lack of support. I had people sending love and sharing the posts. I had a lot of “you made me think” which is what we want.
Awareness is a campaign. It will never be over because unless you are touched by it, it becomes something hypothetical. Abstract.
If there’s too much of it, people de-sensitise and lose interest. If there isn’t enough, it will never be spoken about.
The toll from this week came a few days later – like one rolling emotional hangover. But I’d still do it. And I will.
Thank you all for reading this far.