This is my feelings towards Care Fertility in Nottingham. I have been left 9 years on with flashbacks and worry that I inadvertently caused the death of my baby on third round with them.
Dear HEFA,
I am writing this in order that no-one else ever goes through what I went through in 2016. In 2013, we successfully had our son through Care Fertility in Nottingham. At that time, we had a consultant, who then returned to her home overseas.
In 2015, we returned to Care Fertility in Nottingham as we wanted to give our son a brother or sister. We paid for a double round of treatment. In our first round, I had twins implanted but in September, 2015, they died having failed to implant. I developed soreness in my vaginal area and was informed by my GP this was thrush and to take a canestan pessary, by this time both of my twins had died. I had never had thrush before and connected the thrush with the death of my children.
In October, 2015, I saw our new consultant (he oversaw the last 2 rounds with Care) and asked him if the thrush was connected to my babies deaths, he said that it was. I then had our second round of dual IVF being implanted on Easter Saturday (26th, March, 2016). I had created 15 eggs of which 8 were fertile. 2 survived to day 5 and it was recommended that we put our second child on ice, whilst our first child be implanted. The previous day, (Good Friday) I had gone to Boots and obtained a canestan duo as I was feeling itchy again (this was the second time I had ever had thrush, and I now believed that it was connected to the nervousness and worry I was feeling particularly as I believed that the thrush had contributed to the death of my twins and I was desperate that this next baby should survive), I was also feeling slightly bloated with abdominal pain, I later found out this was Ovarian Hyperstimulation Syndrome. I didn't want the thrush to be the cause of my baby's death again. I did not take the canestan as I was being implanted the next day (Easter Saturday).
On arrival at the clinic to be implanted, I was extremely nervous but asked the nurses and team at Care, if I was safe to take the canestan pessary. I was happy to change the canestan duo for just the cream but they advised that it was safe to take the pessary but to leave it until 7 days (the following Friday, 2nd, April, 2016) and to use the cream until this time. Nobody asked about my stomach pain, even though I did mention it to them. The baby was implanted inside me.
The 7 days passed and I phoned the clinic several times as my abdominal pain was getting worse and I didn't know what to do. No-one mentioned OHSS to me and just said to carry on as previously agreed.
On Friday, 1st, April, 2016, I went to see my GP who examined my stomach and was concerned but did not understand the reason for my pain, I also briefly mentioned regarding the thrush but they stated to continue as agreed with Care.
I then went home, and unsure what was happening to me, I followed the advice of care and took the canestan pessary as suggested, as I believed this would resolve what was happening to me and the pain and discomfort I was experiencing. The next morning my pain had stopped and I believed that I had 'saved' my baby's life, not knowing that this was exactly what not to do. On the following Monday, 4th, April, 2016, I then saw another of my GP's at my practice and they spoke to my consultant who said that I had Ovarian Hyperstimulation Syndrome and explained what this is. I and my husband, had never been warned about this risk I then explained that I had taken the pessary and the consultant stated that this was ok.
On the Tuesday, 5th, April, 2016, I was admitted to my local hospital Queens Medical Centre in Nottingham and they took a blood test as I was in extreme pain and worry about my baby. I stayed in overnight and was informed the next day that the blood test indicated that my baby had died. At the hospital, I phoned Care and my consultant phoned back, he seemed surprised that my baby had died as he said that with OHSS pregnancy is more likely to be confirmed at the end of the two week wait.
My baby then passed at 02:40 on Thursday, 7th, April, 2016.
I am a nurse, but had never worked in Fertility and until the loss of my twins had never had thrush before and didn't not understand that thrush does not cause harm to babies during pregnancy, as all I had to go on was what my consultant had said in the October, 2015. I do not know whether this meant that things were not explained properly due to unconscious bias by the clinic staff or not. I was off work the week following the implantation of my baby and I did not have access to colleagues in maternity who could have helped me with any of my questions and all I got from Care staff was to continue as agreed, which is why I took the canestan pessary when I did, as I trusted the care of myself and my child to the organisation.
A few months after losing my baby, having complained to Care and the lead individual there about what I had been thorough, I along with my husband visited Create Fertility near Birmingham, who scanned me and said that I had a blockage on my right fallopian tube and suggested that this should have been picked up by Care at my scans prior to treatment. I was advised to have a salphingectomy which I had in October, 2016 in the hope that I would get pregnant again.
My baby frostie failed to defrost effectively when thawed by Care in 2017, but by this time, I had lost faith in the organisation and went to Nuture Fertility in Nottingham for another 2 pregnancies via donor eggs (as suggested by them) which both failed, however, I feel that the support I received from them was much better than that which I received during my last round with Care.
Since this, I have experienced 9 years of increased anxiety and a belief that I am to blame for the death of my baby, this has included flash backs at various times and due to my Christian faith, difficulties in believing that I may have caused the death of my much wanted baby due to finding out since that a canestan pessary should never be taken when experiencing abdominal pain, like I was experiencing at the time. We did not sue Care Fertility as I was unable to cope with this and we have our son Flynn as a partial result of their input. However, I do want to know that things have changed so that no-one else ever has to go through what me, my husband and my son have had to experience. I am now 51 and unlikely to ever have another child of my own, however, I am experiencing severe flashbacks and difficult dreams regarding what occurred as I blame myself for taking the canestan pessary.
Therefore, I come to the reasons that I have contacted yourselves. Firstly I need policies and procedures to change across all fertility clinics to ensure that firstly concerns regarding thrush and baby loss are made clearer to any aspiring mum. Secondly that canestan pessary is NEVER recommended where a woman is experiencing abdominal pain, and that no-one is ever left hanging for a week not knowing what they are experiencing without clear information given and a review in person by the fertility clinic. This was never offered to me. Also the risks of OHSS, are explained directly by all clinicians at the first round of IVF with any given clinic (even if the woman does not experience that) as it horrifies me to think that this was a risk, but that I was unaware of it at any point including when I was going through having our son Flynn who at 12 years old, now knows that his mum may have accidentally killed his brother or sister who was and remains much loved and wanted.
If I could have a response from HEFA to confirm that this letter will be acknowledged and that these changes have occurred, I would be grateful as I do not want any other woman to experience the distress that I experienced and the consequence of a loss of a much wanted baby.
Thank you