This post has been a long time in the making and it gives me great joy to share it with you. It will definitely be different from my normal post but, hopefully, it will be the beginning of a refreshing new path for LittleButFierce.
This is an investigation into the world of IVF with the help of the moving personal story of Hayley Taylor’s IVF journey. I approached Hayley about working together last November after seeing her update on her GoFundMe page. Since then, Hayley’s story has been covered by LincolnshireLive and was on the front page of the Sleaford Standard.
Hayley is a 28-year-old who works in admin and website management at a local business and her husband, Sam, also 28, works at the local leisure centre. I first met Hayley in June 2018 when my mum started to look after daughter, Amaryllis. It was a short while after that I found out Amaryllis was conceived using IVF. Growing I had only really heard about IVF being used by single women that wanted children or older women for whom it was harder to conceive. The narrow-minded view had been constructed by years of inaccurate representation in the media, specifically in films like The Back-Up Plan and Baby Mama. They had polluted my understanding and, as a consequence, when I found out that Hayley and Sam conceived using IVF, I admit I was confused. Talking to Hayley made me curious about her plight, and that of many others, to have a baby. So, I threw myself into my research and Hayley’s world.
One of the first things I discovered was that fertility problems affect 1 in 7 couples in the UK – that’s approximately 3.5 million people (NHS). In 2016, there were over 68,000 IVF treatment cycles; these cycles resulted in 20,028 births. This means the birth rate per embryo was only 21% (Human Fertilisation and Embryology Authority). I was shocked to stumble upon this whole world I knew nothing about.
People have problems with fertility for lots of different reasons; Hayley and Sam struggle with two out of the many: cystic fibrosis and endometriosis.
My limited personal knowledge of cystic fibrosis has been formed by fragments of GCSE biology and the life of the lovely Claire Wineland, but my research revealed that some 10,400 people in the UK are affected by cystic fibrosis and an estimated 100,000 people in the world (Cystic Fibrosis Trust). Sam, however, has a rare genotype; he is one of three people worldwide with this specific type of cystic fibrosis. What isn’t different from most men with cystic fibrosis: Sam is infertile. 97-98% of men with cystic fibrosis are infertile. This infertility is normally due to a blockage or absence of the sperm canal, also known as the congenital bilateral absence of vas deferens (CBAVD). The blockage or absence of the vas deferens means the sperm never makes to the semen and it makes it impossible to reach the egg. However, infertility and sterility are by no means the same thing; most men with cystic fibrosis and CBAVD (90%) have normal sperm production in the testicles. This means that they can still have children with assisted reproductive technology (ART), (Cystic Fibrosis Foundation).
Loyal readers will know that I’ve covered endometriosis before on my blog with the help of my amazing guest bloggers, Shannon and Molly. Endometriosis actually affects 1 in 10 women of reproductive age in the UK and around 10% of women worldwide (Endometriosis UK). Fertility can be negatively impacted by the symptoms of endometriosis. The chance of natural conception goes down as the endometriosis grading gets severer. The statistics show that after the end of one year of trying to conceive naturally 84 out of 100 people without endometriosis would be pregnant, whereas only 25 out of 100 people with severe endometriosis would fall pregnant. The more severe the grading is the more common scar tissue (adhesions), ovarian cysts, endometriosis nodules and anatomical distortions are. These symptoms make it harder for the egg to implant in the uterine wall.
Hayley doesn’t know her grading because gynaecology team at Pilgrim Hospital in Boston were no help. She was diagnosed with endometriosis at 18 years old and had a laparoscopy in 2008 to assess her condition and remove cysts and scarring with a laser. She was swiftly discharged with the lacklustre advice to “get pregnant”. Pregnancy can alleviate the symptoms of endometriosis but the relief is brief and it is be no means a cure. Hayley was left without information about her condition by the medical professionals she reached out to for support. She learnt the most about her condition from her aunt who also suffers from it. The dismissal by health care professionals isn’t uncommon, the same thing happened to Shannon and Molly; this disbelief in women who are struggling is a rant for another day. In November 2018, Hayley had another operation to have an ovarian cyst removed, but again she wasn’t told if this was endo-related.
Hayley told me that despite her and Sam’s conditions they tried to conceive naturally for 8 years to no avail. It was heart breaking for them to know they might never have a baby, especially when having kids was all Hayley had dreamed of since she was little.
They decided to explore IVF. The thought of using IVF was upsetting at first because it was so final; once Hayley got her head around it, they were excited to start.
The couple went to the doctors when Hayley was 22 years old but she was denied access to the fertility treatments because the NHS requires the patient be at least 23 years old and have a BMI under 30.
Nevertheless, they did have genetic counselling done when they applied this first time. This means they had genetic blood tests done to test Hayley for the cystic fibrosis gene. If she had it, the risk of their child having cystic fibrosis would be 50%. Luckily, she tested negative; their child would still be a carrier but due to the recessive nature they wouldn’t be symptomatic. Hayley said they would have gone ahead even if she had tested positive but they would have just had the embryos genetically tested prior to transfer.
Being denied access to IVF sent Hayley on a downward spiral where she put on weight and exceeded the necessary BMI. It is understandable that this restriction would have a significant effect on Hayley’s wellbeing; withholding a person’s dreams can have a massive impact on them.
Eventually, Hayley lost weight and reapplied when she was over the eligible age. After reapplying, they had a GP appointment for Hayley to be assessed. Sam’s assessment was a lot less glamorous; Sam had to produce a semen sample and transport it to Pilgrim Hospital within the hour. They tested the semen for spermatozoon and it came back negative – this confirmed that Sam couldn’t conceive naturally.
The two of them went on holiday whilst they waited for news about whether or not they had been accepted. The letter of acceptance was waiting for them when they arrived back home. They both cried with joy.
The letter pack contained details for an appointment with their chosen clinic, Nottingham’s CARE Fertility Hospital, and forms to fill out. At the booking-in appointment in October 2016, they discussed starting the process and the clinic offered six counselling sessions to help support them through the emotional journey.
It began with setting a date for a retrieval operation where the doctors would see if Sam actually had normal sperm production in his testicles. They were booked in for the followed January. This particular procedure was a PESA (percutaneous epididymal sperm aspiration); a quick and relatively painless procedure done with local anaesthetic. A fine syringe is inserted into either the epididymal or testicle to extract the sperm. With each procedure there is roughly 50-100% chance of extracting sperm successfully (HFEA). The outcome of the operation would determine their next steps. Luckily, the results showed that Sam wasn’t sterile and they could extract the sperm successfully.
Next came Hayley’s 3D internal scan before she could go ahead with any treatment. Fortunately, they found nothing untoward so they could forge on, however despite this all clear she still needed to have internal scans throughout the process to keep checking on her endo symptoms.
To mature her eggs and thicken her womb lining, Hayley had to buserelin injections everyday at about 8pm. Buserelin is a GnRHa (Gonadotrophin releasing hormone agonist) which removes the body’s natural ovarian cycle – this improves IVF success rates by reducing the number of cancelled cycles and preventing premature ovulation of eggs developing within the ovaries (Endometriosis UK). These didn’t go as planned though and she needed to stay on hormones longer because her body wasn’t producing eggs quick enough. She had to drive to Nottingham daily for scans to check follicle sizes.
Sam was amazing throughout all this. He was so supportive and would bring Hayley anything she needed or wanted. It was uncomfortable to inject herself daily, but the emotional toll was the worst part – she felt like a total nightmare to live with whilst taking the injections.
To induce ovulation, Hayley’s follicles needed to be 18mm. At her ovulation point, she had almost four follicles at 18mm and some smaller ones. When they collected her eggs, they managed to get ten eggs, eight of which were mature. During the egg extraction, Hayley was given paracetamol and just enough anaesthetic to put her to sleep. There was a slight cramping for couple days after but it was nothing compared to her normal period cramps.
The next step was fertilisation in the lab. The process ICSI (intracytoplasmic sperm injection) is used. The embryologist injects a single sperm into each egg. This gives them the best chance for fertilisation (90%). Six of their eggs fertilised which is a huge amount, but then they had to wait to see if they would make it the five days to become blastocysts. Only two did.
This meant two NHS-funded chances. The funding for NHS IVF procedures is subject to a “postcode lottery” and where the Taylors live you only get one full round (so attempting pregnancy with these two blastocysts) or a live baby.
The embryo transfer was scheduled for 14th May 2017, a bank holiday so Hayley didn’t have to take time off work. The embryo transfer was amazing for them to experience; they both went into the theatre and saw the catheter be inserted. The swish of the embryo was a little flash but it seemed magical to the two of them.
Then, there was the dreaded two week wait to see if the transfer had worked.
During this time, Hayley had to continue to use the vaginal progesterone pessaries she had been instructed to use since the egg retrieval. The progesterone acts on the womb lining and causes it to thicken in preparation for a fertilised egg to implant. The pessaries weren’t painful to use but they were uncomfortable as they needed to be inserted as far as possible and there was a lot of discharge which was gross. The emotional part, again, was the worst – stupid hormones!
After those two weeks, they had the longest three minute wait of their lives. They didn’t know what the test result would be but they had faith it would work. If it didn’t, they’d cross that bridge together. They felt so lucky to see the two small lines on the test that first time. They both cried happy tears once more (and no doubt a little from relief).
They were reassured that the risks of this pregnancy were the same as with any pregnancy but, due to the IVF nature of the pregnancy, Hayley and the baby were monitored closer than usual. Her last appointment at the CARE Fertility clinic was on June 6th at their 7 week 6 days scan. They had further scans done at 13, 20, 28, 32 and 38 weeks and after every scan they had to see a consultant. The extra scans meant they got some beautiful scan photos of their baby that they could treasure forever.
In January 2018, Hayley had a pessary to induce labour and, after just less than 24 hours, 8 hours of active labour and a vaginal birth at Lincoln Hospital, Hayley and Sam were able to welcome their daughter into the world.
Amaryllis Faith Taylor was born 12th January 2018, weighing 8lb 3oz.
Gorgeous photography by Leonie Popplestone
Labour was long, emotional and exhausting but Hayley was elated when she could finally hold Amaryllis in her arms – it was more than she could ever have dreamed.
The entire experience was perfect for them. Hayley treasures the fact she got to see Amaryllis being transferred back into her day five. I asked about how connected Hayley feels towards Amaryllis and if her being an IVF baby makes any difference. Hayley’s answer didn’t surprise me: having Amaryllis feels special, precious and, in some ways, they feels she’s more loved because they had to fight and work for her.
Obviously, despite their inability to conceive naturally, the Taylors have been lucky in their pursuit of a family. Others aren’t as lucky. I wanted to acknowledge this struggle with Hayley and we realised it is hard to find the words to comfort or help others as each plight is so unique. She emphasised how sorry she was that they are going through this and she understands their personal distress.
An important part of this post was to allow Hayley space to thank all the people supporting them through their IVF journey. They know that they wouldn’t be able to do all of this without the continued help and support of loved ones. Thank you!
Circling back to the reason I approached Hayley back in November, it wouldn’t be right to tell Hayley’s story without discussing the next steps they have planned and need YOUR help with. The couple have their remaining embryo in a freezer at Nottingham CARE facility and they’re asking the public for help as they don’t have the funds to do it on their own. They need to raise around £2,500 for another round of treatment as the cost of the embryo transfer alone is £1,750; that is without consultations, scans, blood tests, medications, and various other unseen costs.
The Taylors have less time than most to build their family due to their illnesses. It is likely that the grading of Hayley’s endometriosis will get worse over time and prevent her from carrying another child. Sam’s cystic fibrosis means his life expectancy is lower than most. Unfortunately, the median age of cystic fibrosis patients who died in 2017 was 31 years old. When Sam and Hayley got together his life expectancy was only 40 years old, but statistics say that, with the advance in medical knowledge and care, half the people born in 2017 would live to see their 47th birthday. Luckily, Sam has only been hospitalised two or three times in the eleven years the couple have been together; other people with the condition aren’t as fortunate like the activist Claire Wineland, who sadly passed away in September last year at the age of 21.
This move has been seemingly controversial to those seeing their appeal but the couple fear that the embryo will perish before they are able to use it. Of course, it will not a guaranteed success but the chances of conception are better with a frozen embryo providing the embryo makes it through the thaw. This means they won’t know until the morning of the transfer if the embryo has made it through. Despite not knowing, Hayley has to prep her body before with pessaries regardless.
In case the embryo doesn’t make it, they also have sperm frozen which they can use and try IUI (intrauterine insemination) – a process that uses a catheter to insert the sperm directly into the womb. If that procedure doesn’t work, they’ve decide they’ll stop trying as there comes a point that you need to let go and this would be the natural point for them. They could try a full cycle again but doing so would be too expensive and would put Hayley’s body a lot.
Adoption is an avenue they’ve always considered because there are so many children without homes. This would be the next stop in building their family.
I hope that as a community, both locally and online, we can pull together, dig deep and help this beautiful couple build their family. Their GoFundMe page link is here.
Share your IVF story with us on Twitter and Instagram using the hashtag #MyIVFJourney.
Let’s also show our support for the journeys of other IVF families, endometriosis and cystic fibrosis patients. Find more information here: Endometriosis UK, Human Fertilisation and Embryology Authority, Cystic Fibrosis Trust, Cystic Fibrosis Foundation, CARE Fertility, and Claire’s Place Foundation.