I have anti-Kell antibodies. I didn’t realize that I had Kell antibodies until my booking bloods during our second pregnancy. I had been sensitized during our first pregnancy, and we knew nothing! We’ll never know when I became sensitized, as my first child and I would have been mixing bloods throughout the pregnancy. We’re just so grateful that Will arrived safely. We had no idea what was coming…
After finding out at 6 weeks (during our second pregnancy) that I had Kell antibodies, our lives changed forever. My titer was 1:2000, 1:16 is considered high! We managed to get ourselves under a marvelous professor in Jessops hospital in Sheffield, United Kingdom. This antibody can cause fetal anaemia, which can be treated by Kell negative blood being put into the baby whilst in utero. The only true way to monitor our baby was to scan her brain.
The scans were awful and we held our breath each time. Multiple of the Median (MoM) are a score that can be calculated. MoM of 1.5 or greater indicates severe anaemia and should be treated with intrauterine transfusion. Our MoMs were high from the get go, boarding on the 1.5 line and we were scanning twice weekly. One evening I stopped feeling our baby moving. I knew something was wrong. We went for a scan the following day which confirmed that our baby had passed away. It is a moment that will forever haunt us. 48 hours later we delivered our gorgeous little girl, Nancy Stella . She was born sleeping on the 9th July 2017. The post-mortem confirmed that the antibodies were to blame. I didn’t think I was going to be able to continue. I struggled for a long time to accept what had happened and I felt really angry at the world! The grief would hit like a tidal wave.
I thought I’d never want to endure a pregnancy again. It turns out that I wanted it more than ever. I never really understood why I wanted it more than ever. I always thought it was because I’d given birth and not had my baby with me?! I was determined and anyone that knows me knows that once I set my mind on something, nothing will stop me!
I didn’t know how we were going to do it. It felt like I researched during every available moment I had. I was obsessed (one of many parts of grief), so I researched everything! IVF with PGD (pre-implantation genetic diagnosis) looked good. We had initial tests and it seemed like this was going to be the best route for us. I had never heard of it before – I’d always assumed IVF was exclusively for fertility. I never knew that it could be used to support genetics. The science of it is unreal! It makes me really want to study genetics!
So Al and I had a consultation with a genetic counsellor in South Africa to see if PGD would work for us. After that, our family DNA profile was sent to Michigan in preparation for our PGD round to begin. Once that was completed, we began the process at CARE Nottingham. It was just like a normal round of IVF – the difference being that my embryos were then biopsied and frozen. The biopsy was sent to Michigan to be cross referenced with our family DNA. They were looking specifically at the Kell chromosome (as well as checking the other chromosomes), and trying to find a compatible embryo(s) to implant! It is worth mentioning that in the UK they will only transfer one embryo during a PGD cycle.
We had our first round of IVF with PGD in July 2018. What a game of roulette; the outcome was devastating, a blow we weren’t expecting! All of the embryos were affected – they were all Kell positive and not compatible! I will never forget that phone call, and then telling our friends and family. This really knocked us, and we even considered the “let’s see what happens” route, but inevitably we both knew we couldn’t survive another loss like Nancy.
After much discussion with each other and our nearest and dearest, we decided to pursue a second round of IVF with PGD in Jan 2019. This time I was more head down and get on with it. I went into it expecting bad news. I remember my dad watching me self-inject and it upset him – he didn’t like to think of me putting myself through it again! I told him that each injection offered me so much hope, and that it was the happiest I’d been since losing Nancy. It turns out that this roulette game went in our favour!
There were 2 suitable embryos! That’s a phone call I won’t ever forget. “You have 2 unaffected embryos!” Al and I went out, drank way TOO much, and had the best night is ages! We laughed, we felt happy! We still had a long way to go. To prepare my body for transfer meant sending myself into the menopause! Our embryo was transferred April 25th 2019!
The process of IVF is complete emotional, physical and mental torment! I hope that doesn’t put people off, it’s really not meant too! It’s just a rollercoaster! The process is just so unpredictable! As 50% of our embryos were likely to be affected (Kell positive) and not suitable for transfer, we were told we’d need a lot of embryos! My first egg collection we got 16 eggs and no suitable embryos! We got 22 eggs from our second round and only had 4 embryos that made it to blastocyst (a day 5 or 6 embryo that is well formed and good to transfer). I felt quite lonely during the process. I am surrounded by an amazing family, friends and a wonderful husband, but the demand on my body was just exhausting. Because it’s my body, not theirs, I kind of felt like people just didn’t get it! There were days when I would look at all of the medication and feel like it was never going to end! It was also very time consuming! I had lots of scans and adjustments of hormones! I also got sent into the menopause so my clinicians could take over my body! So many injections! Oh… and pessaries (vaginal suppositories)… ha, that’s a whole other story! The one thing I will say, is that you never fully appreciate what your body is capable of, the good, the bad and the ugly.
We were lucky that our second round worked! Even with a 98% chance that the baby would be fine, the pregnancy was a struggle for me. I hardly told anyone until I had too! I felt fiercely protective of the pregnancy. I was terrified that we were going to lose this baby too. I’m actually terrified for anyone that tells me their pregnant. I know that’s crazy, but it’s the reality of the trauma. The same professor who had looked after Nancy agreed to monitor this pregnancy too. During the pregnancy we had 12 brain scans and 26 anomaly scans. Each scan was filled with dread and fear. It was a process we knew would be difficult, but so completely worth it. On December 30th, 2019 our wonderful rainbow Elsie Grace was born.
I would do IVF PGD a million times over if it meant I could deliver a healthy CRYING baby !
I hope our story has helped. I am more than happy to speak further on a private forum.