Rebekah shares her story to give others hope

Posted by Devon Partnership Trust in Mental health, News, Recovery and wellbeing on 2nd November, 2018

Rebekah has worked closely with members of our perinatal service for some time, including helping to shape the design of our new Wonford House MBU.

For years Rebekah tried to hide having perinatal depression, but now she is sharing her story in the hope of helping others.  This is always a brave thing to do and we are very grateful to Rebekah for the support she is continuing to give our perinatal service, and other mums, and for taking the time to share her personal journey with others.  Here is Rebekah's story as it appeared in Devon Live a few days ago:

Cradling her baby in her arms for the first time, a Devon mum felt nothing but numbness having endured a ‘lonely battle’ of anxiety throughout her pregnancy following an earlier miscarriage.

The day after becoming a mum, the outpouring of love Rebekah had expected to feel did come, but along with it came four years of difficulty trying to mask perinatal depression which got so bad she once tried to jump out of a moving car.

Consumed by a fear her baby would be taken away because he would be better off without her due to her mental state, the 37–year-old unsuccessfully tried to hide her inner turmoil from all those who knew her in fear of losing her baby.

The help she received made her temporarily feel she was ready to become a mum again, but again she suffered a miscarriage before giving birth to a healthy daughter who is now 18 months old.

With both children, Rebekah has continued to battle with her mental health. Her son is now four years to four years which she describes as feeling like lost years.

Determined things will be different with her daughter, Rebekah, a vet, has broken her silence for the first time about what she and her family have been through in the hope of ending the stigma surrounding perinatal depression and showing how it affects not just women, but also men, in very different ways.

Rebekah is also using her experience of postnatal depression by helping to shape services locally. She has been asked by adult mental health services provider Devon Partnership NHS Trust (DPT) to be involved in the design of services at a new mother and baby unit (MBU) in Exeter.

Until recently, there was no MBU in the county which meant women, their babies and families had to travel outside the area for care and treatment. DPT opened an interim four-bed MBU at the Wonford House site in Exeter this spring. A brand new eight-bed MBU is currently under construction on the same site and will open next year.

It will provide a safe, welcoming environment to support mums with serious mental health needs alongside their babies.

This is Rebekah’s story:

I had been with my husband for seven years before deciding maybe it was time to give the baby thing a go. I got pregnant very quickly then miscarried very quickly. I thought I was all right about it but I really wasn’t.

I was lucky enough to get pregnant again soon afterwards, but started to bleed around six weeks into the pregnancy. There were many fraught trips to the early pregnancy unit, and each time that little heart beat was still there my anxiety levels got a little higher.

We made it to 12 weeks and I should have been elated, but I was terrified. I didn’t dare tell anyone though because how could I be in such a mess after one miscarriage when I had a friend who was enduring her fifth?

How could I admit that I was struggling at work when I had only been in the job a year, was ferociously stubborn and independent, and determined not to be encumbered by pregnancy?

At 18 weeks I was going insane with worry. I was no longer stricken with morning sickness and it was too early to feel any foetal movement so I didn’t feel pregnant at all. I couldn’t sleep, I was constantly agitated and then permanently fearful my state would somehow kill the baby.

I asked my husband to make me a midwife appointment, hoping for reassurance. It was a disaster. The midwife said: “Well my dear, if you are this worried now, how on earth will you manage when it is actually born?” I felt utterly humiliated. She asked if I thought I should have cognitive behavioural therapy. The concept of behavioural therapy sounded alarming so I thought, no thanks, and left the appointment firmly resolved to keep my thoughts to myself in future.

I continued my lonely battle against anxiety, alongside developing symphysis pubis dysfunction and enduring stressful situations at home due to a father who was undergoing his own health crisis, and a husband who was due to start a new job travelling all over the country, just two weeks after my baby’s due date.

My labour was described as traumatic. It took two surgeons to pull my very stuck, very big baby son out. He was black and blue but we were just so grateful to the medical team for delivering him safely.

I felt absolutely nothing on holding him for the first time except revulsion at his size and complete, numbing fear. My husband was kicked out just two hours after I had given birth. On the postnatal ward I called for help but the midwife told me they were too busy and I would have to manage. I could barely lift my baby without searing pain.

I was transferred to the local community hospital the next morning and suddenly fell head over heels in love with my new son. But he wouldn’t stop screaming, and he didn’t for about a year.

He refluxed and screamed, and fed and didn’t sleep, and repeated this cycle endlessly. I developed infectious mastitis when he was 10 days old and was fairly delirious for two days. My husband returned to work and my mum drove across the country to help. My mood deteriorated rapidly.

I felt like everyone was trying to take my baby away from me, and no one trusted me with him. Even worse, I was terrified if I did let someone look after him so that I could rest, either they would be better with him than I was, in which case, I should clearly do the selfless act of leaving him in their better care. I also feared his screaming would cause them to dislike or hurt him.

I believed I was better off staying on red alert at all times. He wouldn’t take a dummy and my husband tried to give him a bottle to give me a break, but all I could hear through the thin plaster walls of our home was howling and screaming. It was more than I could bear.

Breastfeeding was the only thing that I could do for him so I thought, let me do it, stuff sleep.

I started to avoid going out in public as I was so ashamed of breastfeeding and so ashamed of the screaming baby that didn’t have a dummy. I was petrified of pushing a pram, but how could I tell anyone this?

My health visitor called the perinatal mental health team. When they came to my house I was horrified. What had I done wrong? What would people think?

They asked me how I felt about my son and I replied I adored him because I really did. They said there was nothing wrong with me other than sleep deprivation. I was so relieved but inwardly so confused. Why couldn’t they see why I couldn’t sleep? They didn’t know I used to sit by the Moses basket as soon as he was asleep, desperately checking for signs of breathing. When he did finally fall asleep after yet another colic episode, I couldn’t fall asleep as I knew he would be awake again within hours.

I begged my husband to hit me so that I would be knocked out and could finally sleep. I also tried head butting the wall. Days and nights blurred into one long nightmare and when I woke up in the mornings I felt so much gratitude he was still alive and hadn’t succumbed to cot death, but then this awful creeping dread at the day ahead would wash over me.

I couldn’t stop crying. Our dog destroyed the house, the baby destroyed my sleep, and the situation eroded my relationship with my husband.

At my eight week check my GP was astute enough to ignore my protestations of ‘fineness.’ She offered me medication, which I refused, and I started going to birth trauma counselling sessions. But I didn’t dare admit to the ‘other’ feelings that were happening.

I became convinced that because my son screamed all the time, if I didn’t get it ‘right’, if I didn’t look after him properly, he would grow up to become a mass murderer, all because I hadn’t helped him when he was a baby.

Clutching at straws, my husband took me to see some friends, one of who was pregnant and one of who had a baby. I tried to jump out of the car on the way there, not because I wanted to kill myself, but because I couldn’t bear them seeing how useless I was. I felt I shouldn’t have become a mum.

I got dragged back to the GP and began a long battle with medication. The first day I took it will forever be imprinted on my memory because I was so stricken with the side effects of nausea and dizziness that in trying to walk the dog and push the pram, I dropped the pram in a ditch to avoid an oncoming car and upended it.

The driver yelled at me, and I felt so very low and so very useless. I hated myself for taking medication so I took it at the lowest prescribed dose for three months and then went back to work and halved the tablets again.

I took myself off the drugs completely a few months beyond that, just weeks before having major surgery to correct the damage sustained during that traumatic delivery, all because I needed to prove to myself that I was still a capable human being who could get through stressful events without the anti-depressants I had been taking.

I told no one at work and spent 18 months hating myself. My family knew about the initial postnatal depression but not about its lingering effects and how it haunted me daily, or about how I spent most days constantly worrying what my emotions had done to my son, my marriage, myself.

Then we had a Christmas holiday where everyone was on form, even my son was screaming less and sleeping more. In a rare moment of stress free tranquillity, I decided another baby would be so welcome.

I got pregnant again very quickly and just shy of 12 weeks I had a small bleed. My husband was away and so a friend took me for the scan and I was told the baby was dead and had died a few weeks earlier. I felt so tricked by my body and I still feel sick thinking about it now.

I held it together over the next six months aided by the perseverance of my GP and regular counselling sessions. After months tainted by physical illness and misery, I got pregnant again. The bleeding thing happened again but this one hung on in there.

By 16 weeks I was a nervous wreck but I didn’t dare phone the perinatal mental health team for some crazy superstitious fear that the more people I told, the more likely a miscarriage would be.

At 21 weeks I had surgery to remove a rapidly growing breast tumour, followed by a repeat operation two weeks later. By 28 weeks, I’d had the all clear from the breast team and the baby was growing well.

I was so fine I finally booked an assessment with the perinatal mental health team and told myself I was making the appointment to keep my health visitor, GP and husband happy. Looking back, I think I was on an adrenaline overdrive because the crazier life outside of the pregnancy got, the more I felt proud of myself for coping with it all.

I agreed to regular contact with a mental health nurse, to regular GP reviews but no, definitely no, to anti-depressants.

My daughter was delivered via elective caesarean section which wasn’t straightforward. I knew within days that I wasn’t doing so well, but I tried not to succumb to perinatal depression a second time.

The pressure was so overwhelming I hid it from my parents, husband, friends, colleagues and health professionals. I thought, how dare I be depressed when the baby I was desperate for had arrived safely? I even hid my phone so I couldn’t be tempted to call anyone for heIp.

Fortunately, I had a very savvy mental health nurse and a GP who knew me and all my tricks well, and friends who never ever stopped calling.

It was different this time though as I didn’t feel terrified of going out in public with a baby. This one screamed less and attracted attention for all the ‘right’ reasons. I didn’t have the anxiety but I did have overwhelming depression.

I could easily slide through the day but nothing registered. I just didn’t care about anything surrounding me, apart from my two little people. I would cry first thing in the morning and last thing at night when no one could see.

I would choke back tears while trying to read my son his bedtime story, and I was physically ill all the time. I lost my appetite, and lost so much weight I hated seeing myself. I wanted to eat, but I felt so sick the whole time that swallowing just invoked retching.

I wanted someone to put me in hospital and take care of me so I didn’t have to do it all anymore, and so I didn’t have to feel guilty I couldn’t manage my own children.

But I just wasn’t prepared to go into a mental hospital. That very word, mental, made me think, what did that make me? My self-confidence crumbled and social occasions triggered inward panic.

Then my daughter developed reflux and sleep stopped and more screaming started. “Do you think about suicide?”, professionals asked me. I didn’t think about anything other than what I couldn’t do. I couldn’t be a mum. I spent a year intermittently plotting my departure, including researching houses I could afford to rent alone; anything to release my children from their crazy, utterly inept mother.

I was in turmoil because I didn’t want to leave them and I couldn’t bear to leave them, but I felt I was being so selfish. I finally broke down in front of my husband when my daughter was eight months old and admitted I had dropped our son off at nursery and told him I would be leaving the family later that day. It was an awful thing to say and I can never take it back. I can only keep trying to repair any damage done.

My mental health care got stepped up a level. I slowly increased the low dose of anti-depressants I had begrudgingly agreed to start taking some months before and began psychology appointments.

I went back to work and I started to talk. I’m slowly recovering and, a year on from that fateful day of breaking down, I have mostly good days. We generally have a happy household.

I still take the drugs, and I still do so begrudgingly but accepting now that it is the thing I can and must do. Along the way I have hugely benefited from healthcare, friends, peer support and lately, involvement in developing perinatal mental health services.

This long story is but a nutshell of the grief I have felt; the fear, loneliness, humiliation and so much shame.

I hadn’t managed like everyone else had. Nothing made sense and through it all, so I had to keep hiding. If you meet someone who might be like me I can only suggest being patient. Have the kindness and patience of a saint because it can be very painful to open up, and seem impossible to see how talking can help.

It’s also impossible to believe your babies won’t be taken away from you, that you won’t be branded with some mark of disrepute, you won’t be forever gossiped about, and you won’t be forever defined by mental illness.

I feel like I lost the first four years of my son’s life. I know it will be different now with my daughter.

The tide is turning in the debate about mental illness. As a society we are so much less judgemental, and so much more caring. I have met some amazing survivors of perinatal depression over the past year and they have given me hope. They have given me strength and if you’ve read this far, I hope this helps in some way too.