Monique's story: Experiencing perinatal OCD

A difficult journey to conceive

I’d always dreamt of having a husband and baby and making my own little family. I was adopted at six weeks old and never felt like I fit in anywhere. I didn’t look like anyone else in my family and I didn’t know anything about my background.

I met Dale, the love of my life, when I was 35 and he was 27. I had travelled the world and reached the career highs I’d aspired to, but I longed to fulfil my dreams of starting a family.

I had known for a long time that my path wouldn’t be an easy one. At the age of 19 I was diagnosed with Graves disease and cancerous thyroid nodules which required radiation. I was told that if I wanted to have children that I would need IVF and that I shouldn’t waste any time. This news was very upsetting, and I wondered, ‘Why is this happening to me?'. I was in my first year at university and didn’t even have a boyfriend.

Luckily when I met Dale and told him my situation, he was so accepting but deep down I was worried he might leave me if I couldn’t provide him with a family.

After a few years travelling the world and having fun, we agreed to start IVF. It took seven rounds of IVF, with multiple miscarriages along the way, before we finally had our precious son, Eli.

This is where I thought our story would end, happily ever after, but ironically this is where the challenges really started.

Pregnancy anxiety

Looking back, I was extremely anxious throughout the pregnancy as I’d had so many miscarriages whilst going through IVF. When I was finally pregnant, I was just trying to hang in there until the next safe stage. With IVF you know whether you are pregnant from two weeks, so it then feels like an eternity to get to the first scan at seven weeks and hear a heartbeat.

It was just constant torture, wishing away the pregnancy so that Eli could be out and safe.

Towards the end of the pregnancy my anxiety got quite out of control. I would turn up at the hospital and ask for a scan as I couldn't feel him kicking. My doctor was very understanding, but I wish he had picked up that my anxiety was extreme and that I needed help.

Despite my anxiety levels soaring during pregnancy, I appeared high functioning to the outside world. I went to the gym at 4am every morning until I was 37 weeks pregnant, and I worked right up until the day Eli was born. I also planned to return to work when he was six weeks old.

I had always loved kids and had spent a lot of time caring for my nieces and nephews. I honestly thought I was going to be a natural mother.

Challenges continue post birth

When Eli was born, he was rushed to the NICU with an extreme drop in blood sugar and needed to stay in there for five days. This meant that the entire time we were in hospital following my caesarean, we didn’t have our baby with us.

Then the next challenge we faced was tongue tie, something I’d never heard of. I tried my best to breastfeed because that’s what we were told we needed to do. But it didn’t work, and Eli was constantly crying and losing weight. We had to top him up with formula, tried lactation consultants, and looked at getting his tongue lasered before we finally worked out that he was actually allergic to cow's milk protein and had silent reflux.

I was so determined to keep breast feeding that I eliminated dairy from my diet, then soy, then basically everything. I was practically eating nothing, and I was just pumping my milk and dumping, trying to keep the milk coming but getting all the allergic stuff out of it. It was horrendous.

Despite the situation not being ideal, I was still coping. I was very much in love with Eli and mentally okay, just.

Then when Eli was four months old, my dad, who had been the one stable presence in my life, as well as my biggest champion, died unexpectedly.

That was when I really started to deteriorate.

I held it together for a couple of weeks before another challenge tipped me over the edge. At a routine maternal child health appointment, the nurse thought that Eli’s head was measuring very large and sent us to the GP. The GP said not to worry as she thought it was just something that ran in my family. We were sent for a scan and were told to come back a week later.

When we returned, I knew straight away from the look on her face that the news wasn’t good.

‘Doctor, please don’t tell me they found anything as that would be the final straw’, I said.

We were told Eli had macrocephaly but that they wouldn’t know until he was 18 months old whether it was benign or due to a tumour. Apparently, it was the first case she had ever seen in 30 plus years of general practice, and she couldn’t answer any of our questions. We were told to watch out for signs of pressure on his brain meaning I had to be even more vigilant and paranoid.

After this I deteriorated quickly.

I started ruminating about losing Eli, then I worried about something happening to me and Eli not having a mum. I was anxious for 24 hours a day. Then the intrusive thoughts started happening. I was too scared to tell anyone.

I went to the shop one day to buy a present for a friend and that is where my first panic attack happened. I thought I was having a heart attack. They then started occurring multiple times a day for no reason. I was in constant fight or flight, and I no longer felt safe to be around Eli or even on my own as I felt so out of control.

My intrusive thoughts started off so clearly. I was suffering dizziness (and later diagnosed with low iron) which led to fainting attacks. This led to me thinking, ‘what happens if I'm bathing Eli and I faint, and he drowns?'. This is where it all started, and the thoughts just got worse and worse.

I was completely incapacitated and in my own head. I was too scared to tell anyone exactly what thoughts I was having in case they took Eli away and put me in jail.

The road to recovery

I knew I needed help right from the beginning. I was told later by everyone (psychologists, psychiatrists, nurses, friends and family) that I presented very well. This made me angry because it was obviously a coping mechanism I had from childhood and being adopted (I have since worked this out through intensive therapy).

I really wish they had listened to my words and the things I was saying, not judging me as being ‘well’ because I was able to make eye contact, talk clearly, dress properly, and have insight about my illness.

It wasn't until the MBU and then mental health facility that I finally got the right treatment (CBT with exposure therapy to my thoughts) and the correct medications.

I got support from PANDA, they were amazing, they explained to me fight and flight and that everything I was going through was 'normal' in lots of postnatal mums and that what I had was anxiety and wasn't dying. They even used to call me to check in which was amazing.

They gave me numbers for other phone support services that would be open when PANDA wasn't. They also put me onto my local Womens Health services who were amazing. I started therapy and then was put into groups including circle of security and met lots of other mums in the same situation. PANDA also referred me to a psychologist who was amazing.

It was a long process, but I finally felt heard, supported, on the way to getting better, not so isolated and alone. It validated everything I had been through.

It was a real struggle, but I am so proud of myself for making it full circle. Even though I am sad and feel it was unfair to get so sick, the friends I've made, the changes in me as a person for the better and just being able to enjoy Eli and delight in his every moment is worth it.