Samantha’s story

Our gorgeous Oxie-May was born sleeping on 4th September 2020. At 18 weeks gestation, she was tiny but so beautiful. We were in love instantly – in that moment we became parents and promised to honour our daughter’s life by telling the world about her once we felt ready.

The journey to parenthood has been anything but easy for us. Shortly after we got married in 2017, we decide to grow our family. After 18 months we went to the GP for some routine checks and said she’d refer if we were still not pregnant after 2 years of trying. Then in 2019, Sam was diagnosed with renal cancer and had to have surgery to remove his right kidney and part of his thyroid. Luckily, he didn’t have to have any treatment and now in remission. We made it to end of the year willing for some happy news for once, we were so ready to be parents at the point.  

We finally got a referral to see the fertility consultant in January 2020. Sam’s sperm analysis came back normal but after an examination on me, the consultant could see that I had cysts on my ovaries as well as suspected low ovarian reserve. Now it was my turn for surgery – I had a laparoscopy and hysteroscopy procedure in February. The consultant confirmed I had stage 2 endometriosis, small ovaries that had cysts on both, lazy fallopian tubes (meaning high risk for ectopic pregnancy) and low ovarian reserve for my age. She was confident that IVF was our best option and we were referred straight away.

Gutted but not defeated, we were glad we had some answers and an action plan. Covid-19 pandemic hit and the UK lockdown delayed our IVF treatment as clinics across the country closed. In the meantime, to our actual disbelief, we conceived naturally. Our little lockdown miracle!

I had a 6-week scan and there was a heartbeat and no risk of ectopic pregnancy, and at the 12-week scan we both saw baby wriggling away with their really long legs. We spent that day celebrating and telling friends and family our happy news.

We decided to have a private scan at 17 weeks to find out the sex. It was also a good excuse to see our baby together as Sam wasn’t allowed to the NHS 20-week scan because of the COVID restrictions.

On 26th August our lives changed forever. The sonographer was quiet; I could tell something was wrong straight away. Then the words ‘there is no easy was to say this but there is a growth or cyst on the baby’s head’. I can’t really remember what happened after that, lots of sobbing and ‘what does that mean’ questions. She just said that we need to be referred to fetal medicine at the hospital for more tests.

Those two days of waiting were torture, we had no idea what we were dealing with. On 28th August we found out that our little baby girl had an encephalocele – where her brain tissue has formed outside her skull, possibly caused by a genetic abnormality. She wouldn’t live outside my womb. The consultant gave us two options; continue the pregnancy to term and baby will either die in my womb or shortly after birth, or I can have a termination for medical reasons (TFMR). I couldn’t believe this was happening to us and our poor baby girl.

That weekend we’d planned to start painting our nursery, instead we were left to make this absolutely heart-breaking decision.

I reached out to ARC as well as speaking to other women on Instagram who sadly also had a TFMR. We decided on a medical procedure in hospital, and Sam could be with me the whole time (COVID restrictions had lifted a little at this time). I was so unbelievably scared at this point, constantly questioning our decision.

On 26th August our lives changed forever. The sonographer was quiet; I could tell something was wrong straight away.

On 4th September in a private room on the gynaecologist ward, I took drugs every 3 hours to start the process to end my pregnancy. The nurse said I would start bleeding over the next few hours. I started having contractions around 11am and we both cried through the pain and sadness.

Two days before the procedure, I took drugs to switch off my pregnancy hormones. I mentally started saying goodbye to my daughter who I had only just started to feel kick in the last few weeks. Sam and I went for a long walk together and decided on the name Oxie-May.

I’m not sure if it was the contractions, the pain relief or the actual heartache but I was physically sick and I even passed out one point. The nurses were worried I had concussion as I’d banged my nose as I fell to the floor.  

After 12 hours I still hadn’t started bleeding and we both started to panic that this was going to take much longer than we thought. I’d taken my last dose of medication at 6pm so it would mean restarting doses again the following morning if I didn’t give birth soon.

The contractions got stronger and changed. At around 8.30pm I felt Oxie-May drop but I was still waiting for bleeding so was still dressed. By 9pm I had an urge to push so I quickly pulled my PJ bottoms down and Sam shouted for help. One push and Oxie-May was born.

I didn’t want to look whilst the nurses helped me, I was too scared. Sam just kept hugging me tightly, comforting me whilst we both sobbed quietly. The silence of no crying baby was all I can remember in that moment.

I asked them to take Oxie-May away as we weren’t ready to see her at that point. I still had to pass the placenta which didn’t happen. I just lay there in disbelief of what just happened – too scared to ask them where they took our baby. At midnight, whilst on gas and air, the gynaecologist attempted to manually and painfully remove the placenta. She was unsuccessful and I was sent to theatre to have it surgically removed.

It was a quick operation and I was back in my private room when I woke up feeling bruised and empty, physically and mentally.

Once I felt a bit stronger physically, I was ready to meet our baby. The nurse brought her into the room, and we spent some time with our gorgeous daughter. She was wearing a little dress and the tiniest little hat. She was perfect. I held her hand and told her how much we loved her. Sam took some pictures that we will treasure forever. I’m so grateful we had the chance to meet Oxie-May.

As we left that hospital room with a memory box instead of baby, we drove home with empty arms questioning how can you ever recover from this. Our whole world has changed forever.

The immediate weeks that followed felt like an empty void, we just closed our door to the outside world except to our immediate family. Lockdown was a blessing and a curse, a great excuse to not see anyone but equally made this even more of a lonely place to be.

In November we found out that Oxie-May’s condition wasn’t a genetic disorder, it was an unthinkable, unfair, horrible one-off. This news still felt just as devastating, leaving us thinking ‘Why us? Why our daughter?’

I do wonder if people judge us for having a TFMR but someone told me ‘you’re taking on so much pain and heartbreak to stop your baby suffering.’ I also try to remind myself Oxie-May has only ever known love.

Slowly we both started to come out of the ‘dark cloud’ and reach out to friends again who’ve been patiently giving us space whilst we processed what’s happened. Grief isn’t linear and each day can be full of triggers.

We decided to start trying for another baby soon after we found out there was no medical reason not to, the desire to be pregnant again was agonising. Oxie-May was our little miracle; we never believed we’d be able to conceive naturally, let alone a second time. But, on Christmas Eve 2020, I found myself holding another positive pregnancy test.

Pregnancy after loss was filled with so much anxiety – questioning every single symptom, checking for blood every time I went to toilet, scared to tell people, scared not too, grieving whilst also grateful. I’d only ever known baby loss at this point, it was so hard to think I might actually bring this baby home this time.

I had to take it at my own pace – therapy, journaling, mediating, yoga, acupuncture, crying, getting out in nature, eating nutritious meals, listening to music, DIY, extra scans and reassurance from midwives helped me get through each day.

Aria was born 3rd September 2021, just a few hours later and she would have shared the same birthday as her older sister! Now a funny, happy 19 month old, Aria has definitely helped heal our hearts but Oxie-May is never far from our thoughts and we talk about her all the time.

I felt compelled to share my story. It’s so important to break the silence of ‘this taboo within a taboo’ subject. If there is anyone reading this who is going through this and would like to talk to someone who’s been through this, please reach out (ARC is a wonderful charity supporting parents) and know you are not alone.