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KATJA'S STORY
"MY BODY GOT HIGHJACKED
- BUT I GOT MY VIKING"
I was diagnosed with endometriosis in 2019 after several trips to A&E, being told it was just 'bad IBS flare-ups'. After my 5th visit, my mum said to me “this is ridiculous - at this point you need to go to the GP”. I had just moved south of the river and needed to register at a new doctor's surgery. I booked an appointment and saw my new GP, and, finally, I felt heard. She sent me to get an internal scan. This scan changed everything. I remember sitting in the doctor's office and her telling me I had what looked like endometriosis / cysts/ spots on my uterus, followed by the dreaded words of ‘infertility’ and ‘struggling to get pregnant’. I burst into tears. I had just got engaged and we spoke about having children so much. I left the doctor's and rang my mum, who at the time was on a ski lift in France(!). I was sobbing my eyes out, saying “Mum, I won’t be able to get pregnant!”. She calmed me down and made me see some sense. I was referred to a consultant who put me at ease a little, as...
...when I asked ‘Will it be harder to get pregnant?” she replied “Yes, but you still can”.
They booked me in for surgery in July 2019. After surgery, I had a follow-up with my consultant, and the topic of potential pregnancies came up. She told me to try for 6months ‘…and if you don’t get pregnant, start the process with your GP’. As someone diagnosed with endometriosis, one silver lining, at least, is that you go straight to the top of the list if you need to be referred - without having to wait the full 2 years of trying - which is the current NHS standard if you don’t have a diagnosis.
2020. Covid arrives. Well, that screwed many things up, including having to postpone our wedding to 2021. Preliminary IVF testing at the hospital was put on hold, too.
Fast forward to 2021, another rough year.
"My father was diagnosed with pancreatic cancer in March, and, at the same time, I was starting my testing".
Fertility wise, things were beginning to move forward, but, as the months rolled on, my father's condition grew worse, and we had to move our wedding date again. To say I was stressed is an understatement; the juggling act of trying to stay strong for my dad, whilst going through test after test, planning a wedding and struggling at work… I burst into tears every now and again. The summer holidays came, which brought with them the worst week of my life. My father rapidly went downhill after a round of chemo. We were told there was nothing more they could do; the cancer had spread, and palliative care was the next step. That very same day, was also the day we were told that we got onto the list for the fertility clinic to start our NHS IVF process.
He was moved to a hospice on the Thursday, and we were all in and out visiting him as well as sorting things for the wedding on the Saturday. On Friday, the whole family took turns sitting with dad. I was the last one of the day. I didn’t want to leave him. It was 9pm and I was getting phone calls from everyone telling me to come home because we had our wedding the next day. So, reluctantly, I went home, had some food and we began our drive to the hotel. 5 minutes into the drive, my mum rang and said ‘they have just called’. I’ve never turned my car around so fast. I raced to the hospice to be with my dad - ‘Pappa’ – and we all sat with him until the early hours of the morning.
It was my brother who asked me what we were going to do about the wedding, and, honestly, it was the furthest thing from my mind. My mum stepped in and said “It’s happening! Pappa wouldn’t want you to change anything”.
It was hard day… to say the least. I was hoping I was pregnant to have a little bit of connection with my dad, but I wasn’t.
"It’s September 2021 and I’m going back to work after the most difficult summer of my life".
The first conversation with my new boss was not only telling him that I was struggling with my father passing away but also that I was going through fertility issues. At this point the NHS felt like they were dragging their feet, and so we started doing ‘mild IVF’ privately. Wow. It was as expensive as it was heart-crushing. We did 2 mild options which didn’t work, then when we had a consultation with one of their doctors that October, they suggested full blown IVF... which was a crazy amount of money. Miraculously, the day we received that quote, we were finally approved for NHS-funded IVF.
November 21’ now, and we went in to see the consultant. We were told based on my test results and my history of endometriosis, that we needed to go onto the ‘long protocol’ and at the end of describing what that entailed he said “we need to highjack your body so we can get the best results”. We left the hospital that day with a pill and some nose spray, and instructions to come back in a couple of weeks for bloods and to work out dates for everything. This was the week before Christmas. On the 24th December we got a phone call to say my husbands blood samples had been labelled incorrectly and couldn’t be used, so he needed to come back in to get them done. We were already at my mums for Christmas and couldn’t make it back on time so he left early on the 28th - when they opened up again - to go and re-do his bloods.
We were back in clinic again on the 31st December and got our ‘big bag full of drugs’ that I would need to make up and inject into myself every day for the next 7-10 days. At 6pm each evening, myself and my husband made up the vile, put it into the syringe, then injected it into my tummy. We had an appointment on the 7th January and they were asking questions regarding covid, and following my own covid diagnosis at the start of December, we suddenly faced issues with moving forward as they now needed to check with the anaesthetist if I could still ‘go under’. They sent us home and said they would ring to let us know if we could still proceed with the egg retrieval. That felt like the LONGEST day ever and I anxiety deep cleaned my kitchen within an inch of its life! However, all was good. I was 6 weeks post covid and therefore deemed safe to go under. We did our 10 days of injections then it was time for the egg collection and for my husband to deposit. They collected 5 eggs and over the next 2 days we had to wait to see if any become embryos. Three made it and I was booked in for embryo transfer! Throughout all this time I was in isolation due to covid rules still being in place. I rested for the next week then went back to work with the hope that the embryo took and I was pregnant. Those two weeks were painful, as, in the back of my head I couldn’t help but think of my friends that had gone through IVF where, for most, it didn’t work first time round.
On the 16th January at 6am I took the pregnancy test (wow, that was a long 3 minutes!) but that little screen showed PREGNANT!!!
I couldn’t believe it! I ran into our shower room and showed my husband and we both burst into tears. We had to wait 8 weeks for our first scan - and I was petrified - but when we saw that little heart beat I felt at ease
"- my body was finally doing something right".
Throughout the process it was very lonely and I didn’t have much of support network, I guess I feel that it’s because it seems to still be a very taboo subject. For me it was because it felt a little like my body had failed in the main thing it was meant to do. I have been very open about it, particularly at work so people at work knew I was going through the process. I’ve subsequently become the person others come and talk to about IVF, which I love because I would of loved that when I was going through it myself. Everyone on the fertility team were amazing, but like anywhere in the NHS, they are short staffed and over worked.
The best advice I was given – and that I would now give to anyone - is to take time to rest from the start of your protocol.
I was forced to, in a way, because I had to isolate, but it really helped me relax as much as my nerves would let me.
With each scan I felt better and better, whilst watching my belly grow.
On the 27th of September I woke up and had my ‘show’ a week before my due date, so I rang the hospital to let them know and went on with my day (I was booked in for my pre birth wax!). Looking back I was definitely having mild contractions while at the beautician! I had a midwife appointment that afternoon, they sent me home and it took the time of drive home for things to escalate enough for me to say “turn around we are going back!”. After 12hrs of active labour (all the drugs, epidural, epeastomy, kewi) ….we welcomed our baby boy Lars into the world.
The first thing the midwife said to us was “ah, he has talipes and a tongue tie”. I was so out of it that in that moment I didn’t care - we had our baby. I had some complications and lost a lot of blood so had to stay in the hospital. When a nurse came round to do their day 2 checks reiterated what the midwife said:
“He has a tongue tie, here’s a leaflet”
“He has talipes here’s a leaflet”
“He has a heart murmur, here’s a leaflet”
“…I will refer him to all the right departments”.
30 minutes later a nurse came to take him up to see the cardiologist. I was left in my room alone and my baby was just taken away from me. I burst into tears. They came back 45 minutes later - at this point I was thinking the worst - but the cardiologist had cleared him. All was good. Throughout our stay all the doctors, nurses and midwives had said ‘his talipes with be fine with some massage and exercises’ so we took their word and waited on the referral. 3 weeks later we got the appointment for just under a months time. I didn’t think anything of it because we were told with exercise and massage it will be fine - how wrong they all were! We went to the appointment with Lars and, instead we were told he measured at a 5.5 out of 6 on the scale and he would need casting, an operation and to wear boots and bars until he was 5. We felt completely blindsided, my little Viking would be going through so much at just weeks old. I cried a lot over the next few days. We were referred to St George’s hospital where they have a Ponseti team and, upon arrival, the lead physiotherapist asked us ‘I’m just wondering, why did it take so long for your referral to come to us we normally see babies at 2weeks old?!”. Lars was 7weeks at the point, and I didn’t know what to say - I felt like I had let my little Viking down. Over the next 3 weeks Lars was cast twice a week to change the position of his foot. The physiotherapist was so happy with his progress they decided to book his operation in. Throughout all of this I just felt so alone, there was no one I could just text and ask questions to and my mind was going to all sorts of places. ‘Is he in pain?’ ‘Will he be able to walk?’ …these where just a few, but I had to stay strong for him. He spent 2 weeks in a cast (with a change in-between when he grew out of it) then we moved onto the boots and bars. These things looked like medieval torture devices! We had to strap them on to his feet for 23 hours a day. Lars wasn’t the only one who sobbed when I put them on him. As the days went on he became less irritated by them, although, even now, it still breaks my heart as I strap him in every night.
"I don’t just call him my little Viking because of our Swedish heritage,
he’s a Viking in so many ways".
We were invited to a ‘Boots & Bars’ coffee morning in January. We walked in not quite knowing what to expect, but to our delight we saw children of all ages running and jumping around. It was such a relief and was so great to see. My husband and I walked out of there and said “let’s host the next one!”. We were so motivated to make sure no other families felt the way we did – which was incredibly alone. None of my mum friends knew what I was (and am) going through, not everything.
We hosted the coffee morning with great success and didn’t stop there. I wanted a community for all of us to ask each other advice and a safe space to ask for help on what to do in different situations, so I set up a WhatsApp group and it’s been a great resource for everyone.
Right now, as a mum, I feel like I’m slowly finding my feet.
"The next hurdle is only ever just around the corner - but me and my Viking will jump it together".
Comparing my motherhood journey with others mums isn’t possible. When I see people posting pregnancy announcements, it still takes me back to that place of when we were trying and I wasn’t able to get pregnant – stirring up that gut wrenching feeling that it would never happen for me.
Even now I have my own baby, it’s still not comparable. I speak to friends that can just do ‘bath time - stories – bed’ but still.. I can’t. For the next 5years I will be putting on his boots and bars and it breaks my heart every day.
I wouldn’t say I have found peace with all of it, as it seems to have happened so fast, but what I can say is that I’m learning to just take it as it comes. I know at some point I need to seek help and speak about all of this and start my process to finding some form of closure.
In terms of the future, we have Lars' little brother or sister ‘on ice’ if we need to go down the the IVF route again, but, in the meantime I’m just soaking it all up with my little Viking!
