GUEST BLOG – POOJA’S STORY

GUEST BLOG – POOJA’S STORY

Forget the auntyjis and cultural pressures; just look after yourself!

Beta (child), you have been married for one year now and still no baby – is something wrong?’ As British Asian women we’ve all heard these comments from countless auntyjis before. Whilst politely delivered, they epitomise a culture which magnificent at times, is also deeply judgmental and still not open about many issues, including infertility.

Having fertility issues is utterly overwhelming, all-consuming and is often something many of us, regrettably, deal with in secret. There’s a lot of shame and embarrassment, disbelief and confusion. This is even more so in the British Asian community because of the immense cultural pressures to get married and have children. There is limited awareness of fertility issues and treatments, leading to those who struggle to conceive often being outcast and ignored.

That’s exactly what happened to me, and I know to many others across the Asian community. And this experience has made me hugely passionate about breaking the taboo and social stigma surrounding infertility in ethnic minority cultures.

After three years trying to conceive, endless visits to the GP and countless heartbreaking negative pregnancy tests, my husband and I conceded that we would need a helping hand from science to have a baby. Because being a mum and having children naturally comes to define your success in many South Asian families, regardless of anything else you may have done, we weren’t able to share our struggle or the anxiety and sadness we felt, with our own families.

Even when we tried to subtly hint at the fact that we had been trying for some years, our struggle was met with confusion, and a hint of disappointment, that we weren’t as perfect as had always been assumed and expected of us.

This lack of awareness and taboo around fertility struggles in ethnic minority cultures unfortunately means couples from BAME groups don’t have the same support networks as white couples. We’re not able to talk to our parents or friends about our issues as openly as others, and we don’t get to tell those around us not to keep asking us personal questions about when we’re having kids. Cultural pressures and long standing protocols, which are wrong and need to be challenged, mean we continue to face a barrage of insensitive questions and comments, and this can often have a negative effect on our mental health.

After changing Doctor and one operation for me, we finally got the answers we had been looking for, a simple issue with one of my tubes had been the problem all along, and not endometriosis, stress or irregular ovulation as had been assumed by many doctors. Hearing this was incredibly difficult; I felt like a failure and inferior to every other woman – how could I not do the one thing that is so natural – bear a child! What made this even worse was the disappointment and embarrassment this would bring on my family and on me amongst the in-laws. I just wasn’t going to be good enough anymore. I felt defective. And so we told no one; we suffered in silence.

In the midst of all of this, our siblings announced their ‘happy’ news. The pressure on us was no immense, and the impending babies were being talked about endlessly without any sensitivity for our situation.

The Asian auntyjis were in their element too, remarking how ‘You don’t want to be left behind or people will start to talk about you’. Yet no one asked how we were doing; we were left feeling lonely and belittled. And all this, just as I was about to start my first IVF cycle.

But we remained resilient! So that nothing, especially not cultural pressures, would disrupt our treatment and our chances of having a baby, we took the decision to stay away from all the aunties, family or friends who were insensitive or judging us. It was difficult but so important and it really helped.

After the rollercoaster of multiple appointments, blood tests and weeks of taking injections every day, the day of the IVF finally arrived. However it wasn’t all good news. Because our embryos were of a high quality, to give us the best chance possible the embryologist advised us to freeze them and for me to have another procedure.

Two months later, after another operation, much needed holiday, and another cycle of injections, we finally had the embryo transfer. I was fortunate enough that my embryo implanted. Nine months later, we welcomed a beautiful baby girl into our family.  We planned to do another frozen cycle with our remaining frozen embryo. However, 15 months later, we were unexpectedly blessed with a natural pregnancy and I gave birth to non-identical twins last summer.

On some days I still struggle with the deep scars dealing with fertility issues amidst social stigma and cultural pressure, has left behind. And three years later, I’m still learning to process what happened and find a peace and acceptance in our situation. I hope by sharing my story I’m able to provide insight and support to others, and most of all, I hope by starting a conversation about the taboo subject of infertility, I can begin to change attitudes and break the stigma.

I want to say a huge thank you to Pooja for sharing her story which highlights the additional stigma and challenges faced by those experiencing infertility in the Asian Community. I hope others who are feeling unable to share their struggles can read stories like this and know that they’re not alone. You can read more blog posts from Pooja at http://www.auntyjisbanglesfertility.com, or you can follow her on Instagram @auntyjis_bangles_babies .

Kreena’s Incredible Story – Breast Cancer, IVF, Heart Failure, Donor Eggs and Surrogacy

Kreena’s Incredible Story – Breast Cancer, IVF, Heart Failure, Donor Eggs and Surrogacy

I was 33 when I received a Stage 3 hormonally sensitive breast cancer diagnosis. Within weeks of my diagnosis I underwent a full mastectomy to my left breast, the next stop of the Breast Cancer bus was active treatment. For me, that involved Chemotherapy and Radiotherapy.

As most people do, I struggled hugely with the thought of chemotherapy. The impact it would have on my physical appearance, the nausea that would come with it, the awareness of its devastating effects would pop to the front of my mind over and over again.

I looked around for women like me, British Asians, who had been through cancer and shared their stories. A face I could resonate with, a story I could empathise with, but they we few and far between. 

I had been told during an early appointment with my oncologist that there was a chance I would face infertility secondary to chemotherapy. It was at that point that my journey with infertility began.

Indian girls are raised in a world full of social pressure.  The pressure of physical beauty, light flawless skin, thick long dark hair, to be attractive to the opposite sex so that your marriage can be arranged when the time comes.  The pressure to succeed academically so that you could find a job, earn a good wage and own a house larger than Mr Patel next door. The pressure to bring children into the world.  To do so within the early years of marriage.  The pressure always falling on the female partner, any issues perceived to be hers and not his. I knew that Chemo would strip away everything that was considered success and beauty within my life.

When the words infertility crept into my Oncology treatment plan, I sank deeper into the black hole cancer had landed me in.

I constantly wondered how I could get through cancer without telling anyone, and now I had to figure out one day becoming a Mother without anyone knowing my struggles. Of course, as time passed I realised that neither were possible.

I had heard about cancer patients harvesting eggs before Chemotherapy from online forums and spoke to my oncologist about it.  I thought that if I could store my genetic material, one day (after this particular nightmare was over), I could have that material put back inside me, I could be just like everyone else. I could still be the person I was expected to be.

I was given 14 days to carry out IVF. To find the clinic, to find the money, to inject myself whilst guarding against feeding my tumour, to have eggs collected and fertilised, embryos created and frozen in time.  14 days to put all those practicalities in place, but not a second to deal with the emotional and mental struggle that this process brings.  For me, that time with IVF was part of my treatment for cancer, it wasn’t about creating a life from a place of love.

It took time for me to fully comprehend what we had done in those two weeks, I often wondered why we chose to do it. Why did I think creating a life was a good idea, when my own life was surrounded by such fragility, I wondered if my husband would ever use those embryos if cancer stole my life, or if those tiny cells that contained a part of me would cease to exist the day that I did?

Fortunately for me, the words that I now read on Oncology papers, and the words that bring me such joy read are ‘In REMISSION’. Cancer didn’t steal my life; in fact, it gave me a whole new life.

Three years after my Breast Cancer diagnosis, my husband and I were on holiday. I became extremely unwell very quickly and was taken to A&E, from there things got worse and I was admitted to Cardiac Intensive Care. I had suffered acute Heart Failure, a delayed side effect from my Chemotherapy 3 years prior.

We were told I may not make it through, that my heart was so damaged it was barely able to pump blood around my body, we prepared for the worst. Somehow, I pulled through, and after months in a foreign country, was allowed to fly home with medical assistance. During my darkest days in ICU I had an awakening, it was as if a voice within me whispered that my time was not up, that I had to pull through; I heard it and believed it with every fibre of my being.

It was then that I received a message from a lady who had found me on a Surrogacy forum. I had been exploring Surrogacy as a route to motherhood for just over a year before I received this message. My oncologist had told me that falling pregnant would still involve risks around cancer recurrence rates, and I couldn’t get my head around becoming pregnant, experiencing motherhood, only to one day be told my cancer had returned.

It took a while to get my loved ones on board with a Surrogacy journey.  Not only had they been brainwashed by stories in the media of journey’s that had gone wrong, but there was simply nobody within the Indian community who seemed to have been through it, and who was sharing their stories about it.

It became apparent very quickly that there were very few, if any, surrogates on the forums I became a part of who were of the same ethnicity as me. In fact, people of colour are difficult to find within this community.  Whilst our community is happy to accept help in this way, we’ve not yet found the strength to give back to it.  There wasn’t and still isn’t enough dialogue around these unconventional routes to motherhood, and as such, representation of minorities within the Surrogacy community are low.

Initially I was advised by people to go to India, to use a Surrogacy House, to create and bring this baby back to the UK without anyone knowing what we had been through.

Whilst this works well for some Intended Mothers, it never sat well for me. I wanted to be as present as I could be in the creation and growth of the little life that would one day be my world. I wanted to see the scans first hand, I wanted to feel the kicks, I wanted to know the woman who honoured my family with this precious gift of life, and for that reason, despite the issues I knew I would face around matching, whether a white woman would carry a coloured child, I chose and committed to UK based altruistic surrogacy.

After returning to England, focussing on my recovery and spending a year getting to know Ina, the person who messaged and stood by me when some doubted whether I would live or die, we found ourselves at our IVF clinic, ready for the transfer of our 5 day old embryo.

Ten days later, it was confirmed that we were pregnant, and nine months later, we became proud parents to our daughter Amaala, our pride and joy. Everyone around us welcomed Amaala into our lives, yet the lack of awareness around Surrogacy and how to talk of it in the South Asian community became apparent as people would ask me, ‘Is she yours?’. I always knew what this question meant, was she genetically mine?  Why was that important was the question I wished I could ask back, but never had the strength vocalise? Why did it matter whose DNA runs through the veins of this beautiful, perfect, gift of a child?

I still find the way Amaala came to us miraculous, the events leading up to her birth exceptional. If it wasn’t for cancer and heart failure, she wouldn’t be the child she is today, and I wouldn’t be the mother I am today.

The tragedy to this part of our story came when our clinic discarded our remaining embryos without our consent.  After transferring Amaala’s embryo our agreement was to re-freeze our remaining embryos.  We knew there were at least four, however a clinical error meant that they were all thrown away, without a second thought to the devastating effects that this would have on us as a couple. A couple who could not collect further eggs, a couple who would never be able to make further embryos.  Back then, and now still I mourn those little ice babies, the maybe babies, who were never given a chance, the babies that were stolen from us before we even had a chance to know them.

However, when Amaala arrived she brought with her so many life lessons, she taught me a love that I had never known before. She taught me that motherhood was so much more than a person giving birth, or the genetics we shared.

She taught me that what made me her mother was the love that I gave her, the protection she felt when she lay vulnerably in my arms. The comfort she felt at the sound of my voice, the feeling of home when I open my arms. She healed the wounds of the lost embryos and gave me the strength to move forward to the next chapter of my life.

We longed for a sibling for Amaala, a partner in crime who she would grow up with, the first friend she would know. 

It was here that I began to look in to egg donation, and our options in this space. It became clear early on that finding an Indian egg donor was not going to be easy.

White friends would say to me, ‘Does it matter if your donor doesn’t share your skin tone? Why is it so important?’

That I guess is an example of white skinned person, not understanding the issues that surround people of colour; a circumstance that my fair skinned friends would rarely have to experience.

How in that moment could I explain how a donor with different skin tone could affect the future of my potential child forever?  I am wholly comfortable with not sharing the genetics of my child yet a match in skin tone, is still a preference that I wanted to explore. Because I have grown up in a community where the colour of my skin has caused me suffering, where feeling like I looked differently to the rest of my class/friends/colleagues has left me feeling so isolated. I don’t want my baby to be exposed to that because he or she ‘looks’ different to Mummy and Daddy.  It isn’t the only characteristic to look for in a donor but would be certainly be a nice to have.

In July 2019, our sibling journey took a very unexpected turn.  After looking into our donor options more closely, I registered with an overseas agency.  I felt a pull towards known egg donation.  For me, it was an extension of my choice to undergo UK based surrogacy.  Knowing that there was so little I could control about this journey, knowing I would be unable to carry the pregnancy, that I would require two women to help make me a Mum brought with it a desire to know as much as I could about the woman who would help me take the first step on this long winding road.

I remember receiving the profile of our egg donor.  She had quoted one of my favourite quotes within her bio. He vibrancy flew out of the page and into my heart. Physically, she looked quite like me. I knew immediately that she would be the donor that I would request.

After getting the logistics of international egg donation and IVF in place, we flew to Cyprus where we would meet our donor and fertilise her eggs to create embryos. There was a familiarity around the process, yet so much of it felt brand new. IVF abroad comes with its own complexities to navigate!  We met our donor after her egg retrieval. We shared stories of our past, we laughed and joked; but more than anything we cried. There were tears of relief for getting to this point. Tears of empathy for the journey’s that brought us all here. Tears of joy at future that we prayed would unfold. The more we spoke the more I knew that this was absolutely the right choice for us.

A few months later, I received a message from Ina, our surrogate who brought us Amaala. A change in her circumstances meant that she was unable to undertake the sibling journey we had spent the past 18 months planning. My world, once again, came crashing down. How could life be so unfair, how could we have come so far to have the dream taken away?

Time passed and I began to socialise on the surrogacy forums once again.  I had created a family within this community, so many friendships made, friendships that would last a lifetime. It was through a friend that I was introduced to Laura. I didn’t know it then, but Laura would soon become the woman who gave us hope again.  We matched with Laura within a few months, and soon found ourselves back in Cyprus, this time for our embryo transfer. I felt strangely calm.  Laura is an experienced and incredible surrogate; she brought enough positivity for us both! We had our transfer and stayed in Cyprus for four days in all. When we returned home, we were in the dreaded two week wait. Seven days in, Laura sent me a photo. A positive pregnancy test, my heart leapt into my mouth, I couldn’t and still can’t believe how lucky we were. A few weeks later at a six-week scan, it was confirmed that we would soon become parents to multiples! Our emotions were off the scale, and now, here we are. Eagerly awaiting the arrival of our newest arrivals. In the middle of a pandemic, knowing the last time I boarded a plane, ahead of borders closing around the world, was with my Surrogate who was carrying an embryo created using a donor egg, to make me a Mum again.

Donor conception is complex, donors of colour are hard to find. Social conditions and perceptions of ‘giving away’ babies are still prevalent and as a result people of colour rarely register to become donors. Agencies still struggle to understand the differences and importance around the ethnicities of the donors on their books; with Intended Parents having to explain the difference between Indian, Mexican, Black or Chinese ethnicities.  These are issues that white Intended Parents don’t have to contend with.

We need more voices; we need more stories.  We need to educate more and to understand the resistance that’s present. To find a way to open conversations, so that more people of colour come forward to help their peers.  So that more surrogates of colour can be found, more donors of colour.  So that more families of colour can be built, and that currently unconventional routes to parenthood become more conventional.

I can’t thank Kreena enough for sharing her journey on my blog, her positivity despite such adversity amazes me and I’m sure it will inspire you too.

You can follow Kreena on Instagram @kreenadhiman and you can also listen to her podcast which she co-hosts called @theintendedparent.

“Infertility is always with me”

“Infertility is always with me”

Guest Blog – By Caroline

Even today, after having our beautiful son, the trauma of infertility remains. It feels a part of me, even when I tell myself it will not define me. It is the voice in my head. My ‘story’ of adversity and triumph. A deep shame, yet a great pride. The light and dark. An old friend that comes knocking on my door once a month.

Reflecting back, I find it hard to believe I had the strength to fight through four years of trying to conceive, multiple rounds of IUI and failed IVF’s. The diagnosis you may ask? There wasn’t one . . . well ‘unexplained,’ whatever that means. You see this diagnosis, for me, felt like a double-edged sword: hope but no hope; aka: torture.

I’m starting to feel selfish as I write these words as I haven’t mentioned my husband and what he went through. Infertility only ever made us closer and I know we’re lucky for that as not all couples survive it. But it was also always a very personal journey for me. The deep-rooted fear of never having a baby was too much for my brain to ever contemplate, never mind say the words out loud to the one person who was hurting as much as me.

Talking of selfish, can you believe I used to be jealous of women who’d had a miscarriage? Hard one to admit. I used to think ‘well at least they can get pregnant, I’d take that.’ Of course, the one and only time I ever was pregnant, the thought of losing my baby terrified me and it certainly wasn’t an envious position.

There are so many layers of self-sabotaging feelings that come from infertility. Shame was a huge one for me: shame of not being able to get pregnant, the shame of not giving my husband a child and the shame of the person it turned me into. I was in a dark place for a long time and was not a nice person to be around.

Prior to our fourth and final round of IVF we changed clinics, agreed a different protocol, new medication and had a completely different mindset. We had a six month break too, during which time I worked on changing the narrative in my head. I told myself it will work this time; I will be a mum and trusted the universe. Our son is our biggest blessing, but I naively believed he would heal us. And as I sit writing this, longing for a second child and sibling for our boy, the old feelings of shame and fear resurface.

Last night for example, whilst the whole street was out clapping for our carers, I was inside crying because my old friend had turned up for her monthly unwanted visit. I then felt very selfish, given we are in a global pandemic, which made me cry even more; then I laughed at how ridiculous I was being. Crazy lady indeed.

Every month I feel stupid to ever believe I can get pregnant naturally but then as the luteal phase comes around (yes, I have all the medical terms down to a tee) I have a glimmer of hope.

Moving forward, I’m not sure if I have the strength in me to triumph once more, knowing the IVF battle ahead.

Good old infertility eh, it never leaves my side.

I want to say a huge thank you to Caroline for sharing her deepest personal emotions relating to her struggle with unexplained fertility, and now secondary infertility. If you’d like to connect with Caroline you can follow her over on – Instagram @Avocado_Fertilty

What Not to Say to Someone Using a Donor

What Not to Say to Someone Using a Donor

There’s been much-needed talk about what not to say to someone facing infertility, but what about donor conception? Inspired by the amazing Alice Rose and her ‘Think, What Not to Say” campaign about fertility, I wanted to provide some similar advice in the context of using a donor. There’s a whole new level of complexity and insufficient awareness of this route to parenthood, which can bring about even more misconceptions and confusion for those who don’t understand, leading to unintentional but potentially hurtful comments for those who are making this huge decision.

I’ve been writing recently to help friends and family best support those needing to use a donor to conceive a child, with this second blog post looking at some of the things that are often said (or sometimes unsaid) that can make us feel uncomfortable. I caveat this with an acknowledgement that some of these comments are well-meaning, but by sharing I hope to show how they can actually be perceived and how they can make us feel. I also want it to be a way of educating others, to help them feel more comfortable when speaking, not only to us, but also to our children in the future. I hope that others will feel able to respond to questions and hold conversations with our children, so that they too aren’t subjected to feeling uncomfortable from triggering remarks about their conception – something which they themselves had no say in.

The last thing I want to do in this piece is to scare anyone into feeling like they can’t say anything or that they’re walking on eggs shells, so I’ve included some advice about how I think it’s best to approach the topic. I’m no expert, just a donor recipient mum who has personal experience and has listened to the experiences of many others. These are views of my own and won’t apply to everyone, but I’m hoping it captures the essence of where things can become hurtful and help avoid some of those more awkward moments in the future.

I’ll start by giving some examples with some of the more ‘shocking’ comments I heard from my Instagram community:

“Think of all the bad genes you won’t pass on”

“Are you the real mother?”

“Referring to the donor as the ‘Dad’ rather than my husband”

“Oh, so you’re a surrogate”

“Maybe you’ll have your own kids one day”

“But it wouldn’t be your child!”

“You never know you might just get pregnant naturally after, you’ll be just like a step-mum”

“Why would you tell the child?”

So you’re not the real Mum?

Many comments centre around terminology and an inference that the parent who doesn’t share genetics isn’t a ‘real’ parent, or that our children aren’t ‘ours’ because we don’t share DNA. It’s hugely sensitive because how we feel as a parent and our legitimacy as one can be one of the biggest fears and emotional challenges we face when choosing this route. After grieving the loss of our genetics we’ve had to think much more consciously and deeply, re-evaluating our understanding of what it means to be a mum or dad.

Parenting is a process. It’s time spent supporting the emotional, physical, social and intellectual development of a child. It’s an act, what we do every single day, the important role that we play which we recognise within our family as ‘mummy’ or ‘daddy’. Everything I do for our girls every single day, every decision I make with them in mind, every emotion I feel in relation to them is ‘mothering’ – there’s nothing more real than that. It’s not denying that there is another genetic parent, but it’s recognising the important nurturing roles within our family, in the context of how it was built.

Often when the word ‘mum’ or ‘dad’ is used to describe the donor it’s unintentional, a slip of the tongue, but it can really touch a nerve when it comes to the relationship between the non-genetic parent and the child. I’ve had this one myself where someone asked if Mila’s curls were from the ‘mum’. It hurts because it awakens one of our deepest fears, about being seen as the legitimate parent. Mostly it’s not because people don’t actually see us as the legitimate parent, but more because they don’t know what words to use, which can be understandable when you’ve never considered donor conception yourself.

This is where understanding about the terminology we as a family choose to use is important. If you’re not sure, just ask us – a good starting point is asking how we refer to the donor. In our family we are completely open, we all acknowledge the important role that our donor played and share complete gratitude for her, but in conversation she will always be referred to as ‘the egg donor’ or, for my children at their current ages, ‘the lady who did a kind thing by giving us some of her eggs’.

Simply put, it’s being open to learn about how we as a family intend to talk about things, which will allow you to be able to support us in doing the same. It’s a message I want to be clear and consistent for our girls as they grow up in helping them to understand how they came to be and how our family was built.

“It’s no biggie, genetics don’t matter”

It’s hard to explain this one, especially because I myself have uttered the words many times – “genetics don’t matter”. In the context of how much I love my girls this is completely true, but it doesn’t mean that I didn’t feel grief and sadness over the loss of my genetics, and that our girls won’t feel similar about their missing genetic link.

Dismissing the importance of genetics can be a throwaway comment, often made to try to make us feel better, to reassure us that it doesn’t matter to them and that they see us the same as any other family. It happens when people want to try to give the impression that it’s “no big deal”, trying to demonstrate that they are fine with the concept, without realising what they are failing to acknowledge – that genetics can still be important to parents and their children. Saying it’s no big deal can dismiss the complex considerations and importance of grieving the loss of genetics. Not only to us as parents, but these comments can potentially be dismissive to a child as well. Should our girls have perfectly normal curiosity about their genetics I want them to feel like it can be something that is important to them, without trivialising their feelings. Please don’t try to tell anyone they’re overthinking it, the importance of genetic connection can vary greatly to each individual – there is no right or wrong way to respond.

My advice would be, rather than dismissing the topic, acknowledge that this must have been a hard decision for them, which gives them the opportunity to share more if they wish. If not, you’ve acknowledged and validated the process they’ve had to go through, which is all that is needed. It’s accepting that it might matter (or have mattered) to us and potentially to our future children.

“At least you won’t be passing on your bad genes!”

When it comes to sharing humour or making light of the situation, always let this be led by the person involved. Saying they’re lucky not to be passing on “bad genes” can be incredibly hurtful and minimises what for many is a core loss. It’s the loss of the ability to see themselves in their child and pass on their family genes, their legacy if you like.

I vividly remember one of the first people I saw speak about using an egg donor at a clinic information evening. She made light of her situation with her explanation for being “quite happy” to have been told she needed to use an egg donor being because her child wouldn’t have to have her nose and that “she didn’t really like her genetic family anyway”. Whilst she used humour, I most certainly wasn’t in the same frame of mind, finding the light-heartedness hard to listen to when I was feeling immense grief at not being able to pass on my genetics. I think it demonstrates how there can be a real spectrum of responses to being told you need to use a donor, there’s no right or wrong way to react. Please don’t assume that it’s ok to make humour or ‘at least you’ comments without understanding how they truly feel themselves and also having respect for the future child whose conception certainly is no joke.

Uncomfortable Silences (and other remarks)

Many told me that some of the most awkward moments are when nothing is said, for example the glossing over of who a baby looks like (for fear of upsetting us) rather than just saying “she looks like your husband”. Changing of the subject can actually be more uncomfortable and upsetting than simply asking a question. Showing curiosity is fine and something I’d encourage, unless you’re explicitly asked not to.

Then there’s total silence and complete avoidance of the subject, something I’ve experienced a few times, and it seems many others have too. It’s understandable that people might feel uncomfortable with such a personal topic they know nothing about. It’s is why I’m raising awareness of this route to parenthood, to normalise the conversation and the feelings surrounding it. But please remember that it’s ok to ask questions, I encourage you to show curiosity whilst being open-minded and non-judgemental. One person said to me, “friends who do it well talk openly like me, have the same gratitude towards the donor, understand our viewpoints, and call out if they actually see a resemblance”. It’s about learning to talk about it ‘normally’, being comfortable to ask appropriate questions, judge the response and respect our family wishes.

What can be hurtful are the comments that suggest an underlying sense of judgement such as “I don’t know how I feel about that” and “I know I couldn’t do it”. We’re not asking you to comment on whether or not you’d do the same thing, no one can truly say unless they’re in that position and have experienced the emotions and challenges of the complex decisions we have to make. It may not be intentional, but it suggests that we’ve done something you’re not comfortable with or don’t approve of, making it about you, rather than how you can best support your friend or family member.

Why would you tell the child?

Please don’t be tempted to give advice on how to tell (or not to tell) our story. I’ve even had a hairdresser I’d just met ask me “Why would you tell the child? There’s no need.”

It might sound like a trivial question for some – on the surface why would there be any need to tell them? I carried them, gave birth to them and have been their mum from day one. Without much deeper thought this can genuinely be the initial reaction of some people, which actually reflects historic advice that was given by the medical profession years ago. What this doesn’t take into account is our children. By keeping it a secret what does this say to them? How would they feel if they grew up thinking they were genetically related to me, and then for an unknown medical reason or through an ancestry test find out otherwise? It’s information I believe a child should have from the very beginning – it’s part of who they are and forms their story of how they came to be.

It’s their own family story, so please don’t force assumptions or views about how they should tell it, it is completely up to them and something they will have given great thought to. What they need is support and understanding from those around them. Instead, it’s better to ask how they intend to talk about it with their child, what language they will use and how you can help over the years.

How can I best support?

Talking whilst the child is still young allows parents to practice, get used to saying things out-loud and become more comfortable in doing so, with the same applying to wider family and friends too. My overarching piece of advice is to think about what it is you’re saying and the impact that it might have. Instead of avoiding the topic completely, show curiosity (without judgement), ask how you can best support them, understand the family building terminology they use and put them at ease by allowing it to flow into normal day to day conversation.

Realistically, there are always going to be people who don’t know about donor conception and ask innocent but triggering questions, especially when it comes to social situations with the inevitable question regarding family resemblances. As a person close to them you can actually help support these situations, with an example I heard recently from a fellow egg donor recipient parent. In an incredibly insightful episode of Three Makes Baby Podcast Sarah talks about a social scenario where in a group setting she was faced with questions about who her new baby looked most like. A good friend of hers actually recognised the difficulty she was facing in knowing how to answer and was able to support. She came up with what I think is the most perfect answer anyone could give to the question of who the child resembles, an answer that I might use myself, she simply said “he looks like himself”. Entirely true and respecting of him as a person, not just focusing on the societal expectations of resemblances but deflecting the question in a positive way and celebrating his uniqueness. I know that it’s all too easy to focus on resemblances, it’s what we as a society do, but it’s also important to remember that there is so much more to them, that they are their own person and that their differences are just as important.

I hope this is useful as a way to educate and raise awareness from a personal perspective. As always I encourage you to share your thoughts and experiences both as a recipient parent or a friend or family member. It’s by sharing these that we can make these conversations much more comfortable and accepting in the future, for us as parents but even more importantly for our children.

Love, Becky x

“We were two 15 year olds sobbing in bed over infertility.”

“We were two 15 year olds sobbing in bed over infertility.”

It was back in May 2010 when my whole world fell apart. I was 15, hadn’t started my periods and I was getting increasingly concerned, especially as my younger sister had already started hers. My mam booked me an appointment with our GP and so we went, I was so nervous as I just knew something was wrong. The GP referred me to my local hospital when the tests began. I had never suffered with any sort of anxiety before,  but this just blew it out of the water. During my first appointment I was actually physically sick. It started with my mam and I waiting in the children’s department of the hospital. I had to have my weight and height measured in the room with two doctors. I was examined internally, told to take my bra off, prodded and poked. I was left sobbing and in complete shock.  The next test was in the maternity ward with new expectant mothers for an internal ultrasound, with tears streaming down my face I sat next to a glowing pregnant woman. I was then told that I would need to have more hormone tests at their fertility clinic. What? I was only 15, why was I needing to go there?

When I returned home I was a mess. I went straight up to my room and just sobbed, feeling like I had been violated and unable to process what just happened. I was not prepared in the slightest. During that time I was in the middle of my GCSEs, but soon I was struggling to even get out of bed on a morning with exams being the last thing on my mind. At this time I also got my first boyfriend, I tried my hardest to forget about the hospital and instead focused on spending time trying to be happy in my new relationship .

My follow up appointment came in the post, both mam and I went together. Not really knowing what to expect, I remember thinking that they’re going to tell me I need IVF and tried to prepare myself.

We sat down, two doctors in front of us, when one started drafting a diagram of the female reproduction system. She said, “your ovaries aren’t responding, your brain has failed to send signals to your ovaries to start working, you are technically in the menopause and you will never have children naturally, the only chance will be with donor egg IVF”. I switched off after she told me I couldn’t have children, broke down and sobbed. My mam sobbed too. I even remember her even offering to donate her own eggs at the time with the Dr saying, “I’m sorry, at 38 your eggs are too old!”

We soon left as I couldn’t take it anymore. I remember getting in my dads car as he anxiously sat outside waiting for the outcome. My mam just said the words “they have told our baby she can’t have kids”. My dad also broke down, we were all a mess. I went home got straight into bed. We were suppose to be going to Scotland that afternoon. My boyfriend came round, my mam told him and he sobbed too.

We were two 15 year olds sobbing in bed over infertility. Now we are two 25 year olds still sobbing in bed over infertility. POI has changed me and I don’t think I will ever get that girl back again. I still grieve over the loss of my genetics and find it hard to look at my own baby photos or images of me as a child because it’s a reminder that I won’t ever see me in anyone else genetically. My heart physically hurts knowing that I will never see the child James and I could have made together. But… because of these experiences I have a new, much stronger personality in place. We are so determined that we will have a family either through donor eggs or adoption that even on the darkest days we still see hope. I’ve still got hope that I will carry our child.

Over this last year I have gained so much more confidence and, although I’m not 100% shouting my diagnosis from the rooftops (I think that may take a while), I’m learning to reach out to others and share my story on my Instagram IVF account. I have met some incredible women including Jenny (@the_poi_guide) where we talk about all the different ways POI impacts on daily life, and also Becky (@definingmum) who gives me and my husband so much hope of parenthood in the future. Our next steps are to go ahead with our DEIVF cycle in Czech Republic, once the Covid situation allows us to. I hope my story can support others in knowing that however dark those days are, you will always always get through them and there is always hope.

I want to say a huge thank you to Kate for so bravely sharing her story. It’s important that we hear from people who have been diagnosed at very different stages of life, I just can’t imagine how difficult it must have been to process all of these emotions during such an important development stage, all whilst as a teenager you are finding your own identity. If you’d like to connect with Kate you can request to follow her on Instagram @positivevibes228.

I also want to mention The Daisy Network who offer great support for those experiencing POI at whatever stage of life.