Donna’s Story

In this article, the amazing Donna (who is also a volunteer for PANDAS) shares her experience with us. It’s a tough, but important read

TRIGGER WARNING – during this article Donna discusses themes of IVF, infertility, traumatic birth & care, anxiety, PND & suicidal thoughts. Please do consider this carefully before reading.

Donna – we cannot thank you enough for the amazing work you do in raising awareness and volunteering with PANDAS. Sharing your story will help so many. We are so grateful to you ❤️

“My name is Donna, & I am 40 years old. I have been with my husband for 13 years, of which we have been married for 8, & we live in Fleet, Hampshire. After several years of trying to fall pregnant, my husband & I started our IVF journey back in 2017. A flurry of tests, hormones, injections & scans – IVF is most definitely not for the feint hearted. After a harvest of 10 eggs & having to do ICSI (Inserting the sperm into the egg), we were left with one blastocyst. The pressure you put yourself under for IVF to work is immeasurable. Not being able to conceive naturally is heart-breaking when you desire a family. Our ‘lucky egg’ as we called it, was transferred & we were over the moon that I fell pregnant on our first cycle.

My pregnancy was not as plain sailing as I wanted it to be or imagined it would be. I was diagnosed with gestational diabetes, which was treated at first by diet, then tablets & then injections twice a day. By this point, I was a seasoned pro at injecting myself, but I couldn’t help but envy those women who had a ‘perfect, plain sailing’ pregnancy. Those who glowed throughout and enjoyed being pregnant. Again, there was this massive pressure from society on how being pregnant should be. Portrayed in movies & on TV as a wonderful experience – the reality is more often than not, completely different.

Towards the end of my pregnancy, I was getting limited movement from the baby & my ankles were swelling up like balloons. After a gestational diabetes clinic check, I was sent to maternity to check on baby & they made the decision at 37+3 days to admit me to be induced due to pre-eclampsia. Hearing that baby is not happy fills you with dread, especially when you have gone through so much to get pregnant & reached that point of delivering a healthy baby.

After 3 days of being induced, cervical thrush making examinations even more uncomfortable & my blood sugars crashing, my pre-eclampsia reached a level where I was taken into theatre for an emergency c-section. Luckily, I was able to be awake for the procedure & my son was born at 37+6 days weighing a healthy 3.45kg on a cold November day. The relief that he was here, safe & sound was indescribable.

When in recovery, my bloody sugars dropped again, & the first few hours were a bit of a blur. Pumped full of drugs & then Lucozade, I was inevitably sick when back on the c-section ward & left to look after a newborn, with a catheter & bleeding. The next morning, they pushed for me to get up & have a shower, so that they could move us to a general maternity ward. My husband was not yet at the hospital, & I was forced to leave my son by my bed, which caused massive anxiety. This was the first time that I had stood up since the operation & to say that I felt awful was an understatement. I saw other women being able to go in with their partners, & I was left alone. To top things off, they had not removed my catheter, & when I asked how I was meant to shower with it in, the nurse literally crouched down & pulled it out. I thought I was going to pass out, but the drive to get back to my baby made me have a quick shower & get out of there as quickly as I could.

Moved onto a general maternity ward, my son was not feeding from either breast or bottle. Due to the gestational diabetes, he had to feed for his blood sugars to stabilise. After several nurses & doctors had attempted to feed my son, they decided to move us to the TCU ward as they suspected that he may have sepsis & would need to insert a feeding tube. I mentioned that his skin appeared yellow, but they checked & assured me that he didn’t have jaundice. Seeing my son with a cannular & not responding sent me into a panic. After finally having my son, for him to be poorly sent my anxiety into overdrive. Thankfully, he finally took a feed & it felt like we were turning a corner.

The next day, I started to feel poorly. After going for scans, they identified that my bowel had stopped working due to shock from the surgery when carrying out the c-section. We were moved to a side room so that I could be treated – quieter than the main wards but isolating as you have no one to talk to & the nurses/midwives are not easy to call over if you have any questions or concerns. Yes, my husband attended during visiting hours, but they seemed so short and infrequent…for a first-time mother, I wanted him to be there with me as much as possible.

Day 8 & we were finally due to be discharged. The nurse who came in to complete the paperwork, mentioned that my son was looking yellow & said that we needed to test for jaundice. Sure enough, he had jaundice (even though I pointed this out days earlier & was dismissed). Another 2 days in hospital with my son on a UV bed. Unable to hold him unless I was feeding or changing his nappy. At this point, I just wanted to get home…

Day 10 & we were finally discharged. My son was a week old, & I still had no concept of what it was going to be like having a baby in the house. I expressed milk for 2 weeks as he would not breastfeed, but I couldn’t keep up with the demand & so had to switch to formula to keep up with his feeds. I felt like I had failed not being able to breastfeed. I spoke to my health visitor who advised me to persevere, but this just made me feel even worse. I started to struggle with the sleep deprivation and started to feel really down.

My health visitor was checking my c-section scar, & I kept mentioning a smell and saying that I didn’t think it was healing properly. I was assured everything was ok but my gut was telling me something was wrong. Eventually, she suggested I make an appointment to see my GP to get it checked out. She also suggested talking about my low mood & proposed me starting a low dose of antidepressant Sertraline, to help. I was prescribed Sertraline & told the scar was ok. 2 weeks later, I was back at the GP for a review of the tablets, & I mentioned my scar again. They took swabs this time & treated it with iodine strips, advising me to go back a week later to have the strips changed. My antidepressant was also increased. When I returned, I was asked to see the GP there & then, where I was told the scar was indeed infected & I was put on a course of antibiotics. 6 weeks after my son was born and I was still experiencing complications from the pregnancy/birth. Was it honestly meant to be this difficult???

Needless to say, my mental health continued to deteriorate. I was referred by my health visitor to a local group for new mums experiencing post-natal depression. A closed group, run by the health visitor team, where we could talk & learn coping mechanisms/why we were feeling the way we did. For some of the mums there it was really valuable, but I think I was past the point of self help by this stage. Driving home from one session, I looked at the road to find places I could crash the car. Not wanting to hurt my son, I wanted him to be safe in a bubble – unharmed by any potential accident. I just wanted everything to stop – a break from feeling so down, tired and a failure.

That evening, I spoke to my husband about everything, & we contacted the health visitor. They escalated my case to the local mother & baby unit & an appointment was made for a review. I went to bed, questioning what they could do to help me. I thought that they were going to say I was an unfit mother, & they were going to take my son away from me. After everything I had gone through to get my ‘lucky egg’ son, I was going to lose him.

I tried to sleep (something that had become impossible, regardless of whether my son was asleep or not). Laying in bed, I saw a man climb through the bedroom window & open the door to walk to the guest bedroom where my husband was sleeping with my son in his Moses basket. I screamed out loud, but no sound came out. I was paralyzed & unable to stop this man from going to take my baby. It was one of the scariest things as it seemed so real. I was awake, at least I thought I was – my mind couldn’t tell the difference between reality & what my mind was telling me. The mind can be very powerful and when you find yourself in a dark place like I did, it is so difficult to get out. It was at that point that I knew I needed some help. One of the team from the mother & baby unit came to see me, and they suggested I go and stay with them for a bit to get help and start to feel better.

It was April 2018 when I checked into the mother & baby unit, my son with me – my room had its own bathroom & everything you would need to care for a baby. The unit deal with the catering, cleaning, & upkeep of the facilities, so that you can concentrate on you & the baby. There was a nursery for the babies to stay in while you attended session, so that you could focus 100% on your recovery, & partners/friends/family are allowed to visit. During my stay, I was placed on a number of difference medications, some to help you sleep, some to help with mood, some to help with anxiety. Regular 1:1 & group sessions were held to talk through what had happened, & how to deal with the feelings. Being surrounded my other mothers who were experiencing similar struggles, helped to show that I was not alone in my thoughts & feelings.

I went into the unit, feeling robbed of any joy I should have experienced from being pregnant & having a baby, especially after going through IVF. I had a pain in my heart that was all consuming & no amount of crying or shouting could stop it. They helped me to see that my thoughts & feelings were not out of place, especially given everything that I had been through. I was in the unit for 5 weeks & after being discharged, I was transferred to a team at The Priory where my psychiatrist & a team of psychologists/counsellors helped me work though my Complex PTSD, Post Natal Depression & Anxiety.

Fast forward to the summer of 2019 & I reached the stage where I had come off all medication & with the support of the team at The Priory, I felt like I was in a good place. My husband I decided to look at trying for another baby via IVF & we started the process in November 2019, however our 2 embryos which were transferred were unsuccessful. Deep down, we thought it would work as our first round was successful…we hadn’t prepared ourselves for it not working. Comments from friends & family such as ‘you have your son at least’ didn’t help in addressing that disappointment or desire to have another child. Their comments came from a kind place I’m sure, but each time it was like a kick in the teeth, & I questioned whether I would ever get to be pregnant again.

We then moved clinic & started the process of a third round of IVF in February 2020. The pandemic hit & I got as far as egg collection/ICSI – the clinic then had to close and our 5 embryos were frozen. June 2020 & the clinic re-opened. We continued with our treatment and 1 embryo was transferred which resulted in a positive test – we were pregnant again! 7 weeks in, we went for our first scan & there was a heartbeat. We were made up and started talking about plans for the future.

2 weeks later we went away to CentreParcs for a family holiday. 3 days in, I woke up to find I was bleeding heavily. We contacted the clinic and rushed back for a scan. My husband had to stay in the car with my son, due to Covid restrictions, so I went in for the scan alone. Those dreaded words were spoken ‘we can’t find a heartbeat – we are sorry, but your baby has died’. A wave of panic spread over me – I had to get out of the clinic as quickly as I could. How could this be happening? I never for a second thought that there was a chance I could miscarry as I had carried my son to term pretty much. The next few days were a blur – limited information from the clinic, & a hunt online to find out information on what happens & what to expect when you miscarry. 2 weeks later I passed our baby – an image I will never get out of my mind. They don’t even tell you what to do once it happens. After speaking to friends, it became clear that miscarriage is actually quite prevalent, people just decide to not talk about it. The irony is, if people talked about it more, it could help with the recovery & instigate more research into why it happens. Luckily, I was still under the care of The Priory & my psychiatrist & psychologist helped me through this difficult time. I blamed myself – was it something I did? Did I overdo it? Is it natures way of telling me that I shouldn’t be pregnant/a mother again?

My husband & I continued to try a further two rounds of IVF, using our frozen embryos. Each time we were unsuccessful in falling pregnant. Is this part of our life together finished? For now, we are having some time out & evaluating life. I am 40 now & classed as ‘geriatric’ for a mother, so perhaps that time has come to look at a different focus.

On the other side of this story is my husband – my rock who would do anything for me, to make me happy. To see me go through all of this, see me struggle & see me admitted to the mother & baby unit must have been terrifying for him. Not knowing how to support me during the miscarriage & not knowing what was going to happen & whether I would ever get back to the person I was before, must have been petrifying. For him, he didn’t have anyone to speak to about his feelings & I find this so incredibly sad. Support for partners is even more limited that the support available for mothers, & this is where organisations such as PANDAS are invaluable.

There is still such a stigma around mental health, even though it has been receiving more airtime due to the pandemic. For those people not keen on medication & treatment such as stays mother & baby units or adult mental health units, please remember that they are here to help you, not cause you more anxiety or distress. Your journey & how you receive treatment is individual to you. Unless you tell people what treatment you are receiving, they will be non the wiser…do what is right for you & don’t feel any shame or failure from having to accept help.

It’s my time to give something back & help other mothers/partners who are struggling. Anyone who is going through IVF, suffered a miscarriage, experiencing anxiety during their pregnancy, or struggling as a parent of a newborn – If they can gain any support/comfort from what I went through, outside of the immeasurable joy of having my son, my journey has had a positive outcome to it.”