Magda, a 29-year-old software developer, regularly fends off questions about when she will have her first child. Coming from a close-knit family and having been with her boyfriend for a decade, the topic is brought up regularly. But Magda grimaces in response, only to be told: “Don’t leave it too late.”

For Magda, the question of when she wants to have a child is complex. There is a serious history of depression and psychosis in her family on both sides. In fact, her mother was sectioned for a long time after giving birth to her.

“I’m not just concerned about passing on mental health problems to any child I might have, I also have serious concerns about the risk to my own wellbeing from having a baby,” she says.

She also worries about the kind of treatment she might receive if she were to have problems. “I’m acutely aware of how awful the mental health support can be in the NHS. I have witnessed failing after failing in the care of my mother. If I speak to a GP about my concerns, will they care and offer advice? If I did decide to have a baby, would they make sure I’m looked after through pregnancy and beyond?”

This is just one of the individual stories sent to the Guardian as part of a project inviting people to discuss the often taboo topic of mental health and pregnancy.



Between 10 and 20% of women in the UK develop a mental illness during pregnancy or within the first year after having a baby. This costs the NHS around £8bn for each annual birth cohort. Conditions range from postnatal depression to obsessive compulsive disorder and psychosis.

It’s not just women either: one in eight first-time fathers suffer from depression while their partner is pregnant, according to a survey by scientists at McGill University in Canada.

Despite this, new NHS England figures show less than 15% of areas currently provide recommended services for mothers with mental health issues, and more than 40% provide no service at all. In almost half of the UK, pregnant women and new mothers do not have access to specialist perinatal mental health services – with even less specific support in place for men.

It’s an issue the government has pledged to address, with £365m allocated for specialist perinatal mental health services over the next five years, the the first tranche of which has just been made available.

So, why is help desperately needed and what sort of experiences do people have? Here are our readers’ stories.



The decision to have a child

For some, like Magda, the challenge begins before pregnancy – many women and men experiencing mental health problems worry about their children developing similar conditions. They also worry about how their condition could affect their ability to be a parent.

A lot of times my days are coping minute to minute. I don’t know if that puts me in a good position to raise a child Daniel Stusiak

Daniel Stusiak, 37, from Aberdeen, South Dakota,has type-two bipolar disorder. In the audio recording above, he explains how his mental health problems influenced his decision not to have children.

When it comes to having children I have two thoughts. One, genetically I don’t like the idea of gambling and seeing whether I pass it on... Second, should that child not have to deal with that, they will have to deal with me as their father and a lot of times my days are coping minute to minute. I don’t know if that puts me in a good position to raise a child in the best way.

The medication question

A lot of women also have to weigh up whether or not they are prepared to come off their medication to have a child. While some drugs are considered relatively safe the evidence is not conclusive, and some have been linked to health problems in babies.

But those who come off any medication are at risk of getting ill again: for example, seven out of every 10 women who stop antidepressants in early pregnancy become unwell again.

Harriet, 32, Stoke-on-Trent

Giving birth was much more painful and difficult than I ever imagined it would be Harriet

I have been told that I may need medication for life to treat my anxiety and depression. When I decided to have a baby, my main fear was that the drugs would be dangerous and I’d have to come off them. I was scared of falling ill, which had happened when I came off medication before – when I was at my worst I had extreme panic attacks about 10 times a day. My dad, who is a doctor, assured me that citalopram is generally considered OK during pregnancy. But babies born to depressed mothers can have worse growth and general health. I talked to my husband and I decided it was safer for me to stay on the drugs. However, I still found the pregnancy very stressful. I worried constantly about miscarrying. I was offered a reassurance scan but it made me more stressed because they noticed a slight abnormality in the baby’s brain. It turned out to be nothing, but I completely broke down. I could not function for weeks and struggled with the rest of the pregnancy. Since the birth my mental health has improved. I love being a mum and my daughter makes me very happy. Giving birth was much more painful and difficult than I ever imagined it would be. Afterwards, you wake up to a life and a body that you don’t recognise. It’s not great for your self-esteem. I put on a huge amount of weight but the pain was definitely worth it.”

Mandy, 36, north-west England

I have borderline personality disorder and a social anxiety disorder. I stopped taking my medication (Escitalopram) when I was pregnant because I was worried about the health of my baby. Some doctors thought it was better I stay on the drug, while others disagreed, and because of this varying advice I stopped. However, coming off it caused me a lot of problems. I started self-harming, for example, and worried about everything. I ended up hiding in my house, which meant I couldn’t go back to work. With borderline personality disorder I can go very quickly from being level-headed to mentally unstable. Being pregnant made it harder to cope with this. I didn’t feel like my body was my own. I couldn’t harm myself physically to rid my mind of distressing thoughts. I was referred to a mental health assessment team and put back on medication on a low dosage. I had one visit with the assessment team but found the nurse dismissive and unhelpful. They didn’t realise I’d had past mental health problems and were treating me as if I had just turned up with thoughts of harming myself. Once I explained to them that I presented before pregnancy I hoped they’d adjust their attitude towards me, perhaps offer more contact, but they didn’t. I coped throughout the pregnancy mainly thanks to my husband and my GP, who I could talk more openly with, but I wish there had been more support from the assessment team.

Hannah from Yorkshire experienced anxiety before pregnancy, but chose to come off medication to treat this in order to have a child. Listen to her story below.



Antenatal

Postnatal depression is often reported on, but less attention is given to mental health issues during pregnancy. While it’s normal for women to experience “baby blues” as a result of hormonal changes, for a large number this is much more extreme. In fact, it is estimated that 7% to 20% percent of pregnant women are affected by what is known as antenatal depression, which if untreated can lead to postnatal depression after the birth.

Women and men can also experience a great deal of anxiety during pregnancy – it is thought that more than one in 10 women struggle with symptoms of anxiety while carrying a child.



I started to have horrible thoughts about my baby – thinking I had made a terrible mistake and wanted to get rid of it Ariana

Ariana, 25, London

I have never experienced mental health issues other than while I was pregnant. When I was around eight weeks, I started to feel upset. The baby hadn’t been planned, but I was ecstatic at first. However, depression soon took over. As the weeks went on it got worse – I hated people talking about the pregnancy and wanted to pretend it wasn’t happening. I started to have horrible thoughts about my baby – thinking I had made a terrible mistake and wanted to get rid of it. Bizarrely, I also decided that when the baby was born, I would swap it with another child in the hospital, and at least then they wouldn’t be my responsibility any more. Fortunately by the time I was heavily pregnant, I didn’t feel negatively any more. I only felt sad that this thinking had ruined my early pregnancy for me. I now have a huge amount of sympathy for anyone who experiences depression.

After having my son, I stayed up all night on the maternity ward just watching him. I remember thinking he was the best thing that had ever happened to me, and I still do now. He is three years old. Postnatal depression is widely recognised, but there is less said about depression during pregnancy. I might have sought help if people talked about it more.

Leila experienced anxiety and depression during her pregnancy, having never had mental health problems before. You can hear about her experience in this recording.

I finally admitted to myself that I was seriously ill after weeks of considering throwing myself under the train Leila

I finally admitted to myself that I was seriously ill after weeks of considering throwing myself under the train on my way to work, followed by weeks of not being able to get out of bed. I lacked the motivation to do anything: get dressed, wash my hair, let alone make any preparation for a new baby. There is a hormonal trigger to perinatal depression and the more the pregnancy progresses the greater the influence of hormones.



Miscarriages



There are no official government statistics held on women who miscarry (they are only collated for women admitted to hospital), but the pregnancy charity Tommy’s says around one in every four women with a BMI of over 30 will miscarry a child.

The effects of this last longer than you might imagine: a study in 2011 found that the depression and anxiety experienced by many women after a miscarriage can continue for years, even after the birth of a healthy child. Men are also affected, although perhaps differently. One British study of 323 men found that although they displayed less “active grief” than their female partners, they were more vulnerable to feelings of despair and difficulty in coping eight weeks following the loss.

Matt Allen, 38, from Brighton, shares his story of how miscarriage affected his mental health below.



Looking back on it it would have been better for me to have someone to talk to [after the miscarriage] and maybe drop the stigma that men have to be strong and carry everyone around them, because something like losing a child does affect us just as much emotionally.

Kaye, Manchester

I’m pregnant for the second time. My husband and I lost our first child when I had a miscarriage in my first trimester. It’s not something you get over. People around you think that it’s all about getting pregnant, but the waiting for the arrival of a healthy baby now is worse than any treatment. I suffer from crippling anxiety – crying at random times, waking up from nightmares. I can’t talk about being pregnant and am still trying to hide it at almost 20 weeks. I wish that I could be offered some counselling. My partner and I received no support whatsoever from the NHS after the D&C [a surgical procedure often performed after a first-trimester miscarriage]. Only now, from reading the Miscarriage Association’s literature am I beginning to understand that the anxiety we are going through is common. A viability scan should also be offered on the NHS at seven to eight weeks as a standard. This can really help to reassure new parents. I do think the NHS should have different support in place for people where this is a Pal (pregnancy after loss), and that includes silent miscarriages. Friends from abroad are often shocked at how few scans we get in the UK and that the chance to hear the baby’s heartbeat at midwife appointments isn’t standardised across the country.

Postnatal

Postnatal depression is an illness that affects between 10 to 15 in every 100 women having a baby. It can start within one or two months of giving birth. It’s also something that hits men too: studies predict about one dad in 10 has postnatal depression. Traditionally, the mother’s mental health gets more attention, but recognition of the dad’s mental health is increasing.

Alice, Midlands

I had my daughter a few years ago and read all the information I could get my hands on. After a difficult birth I eventually delivered my baby. I was exhausted (it took 48 hours in total) and shell-shocked. We stayed in hospital for a few days while trying to get my daughter to breastfeed. I was struggling so much with this that I refused to have any visitors as I didn’t want anyone to think I couldn’t cope. In the end I gave up so that we could all just go home. Luckily bottle feeding didn’t affect bonding with my baby. However, my partner didn’t cope well at all. From seeing me in so much pain and out of control, he tried to take on far too much so that I could recover. His mental health spiralled as a result to the point where he couldn’t look at our baby. He couldn’t handle her crying and one day I found him crouched in a corner rocking. I got him to see a counsellor and the doctor advised that he would recover better if he moved out for a while. He went to live with his parents and we would visit, but he couldn’t cope with the guilt of leaving us. Eventually we got through it and he was able to move back home with us. Unfortunately we didn’t make it as a couple; the strain was too much. Looking back I wish we’d have had more support in trying to deal with his depression but even though this was a few years ago, there was very little awareness about male postnatal depression and a lot of shame attached to it. I wish I could have helped more.

Emma, Manchester

I’d already had a baby and enjoyed being a mum, so when I fell pregnant again I never expected to experience postnatal depression.It was four months before I plucked up the courage to go and see the doctor. I kept telling myself to keep going, and that I could be a perfect mum like the ones you see plastered all over social media. Now I realise that it’s not real. To me, during the dark days that perfect picture wasn’t my life but boy did I try to achieve it. I was really struggling and I told no one. Admitting weakness was like putting my hand up and saying: “Look at me, the bad mum over here.” The day I told my sister and my mum I was at my wits’ end. I cried the whole time. I paced the length of my house for half an hour before I finally made the call to my family. After that I went to the doctor. I thought he was going to laugh and tell me to just get on with it like every other mum, but he didn’t. He told me that this would be the last time I would feel this way and that every day, from today, I would start to feel better. Most importantly he made me realise for the first time in four months that I wasn’t a failing mother-of-two. I’d managed to keep my head above water through one of the most challenging times of my life. We discussed options and I agreed that I would take tablets for depression and anxiety – it was time to give my body a little helping hand. He made me see some things are out of my control and postnatal depression can happen to anyone.



Psychosis

One of the most severe forms of illness seen in psychiatry are postpartum psychoses. In rare but tragic cases it can lead to women taking their own lives.It’s thought that postpartum psychosis affects women in every 1-2 of 1,000 births. It’s more likely to affect women who have had it before (or have a relative who has) or have a serious mental health condition, such as bipolar disorder or schizophrenia.



Lisa Abramson, who suffered from postpartum depression after the birth of her daughter

Lisa Abramson, from San Francisco, experienced severe mental health difficulties after giving birth to her first child. She talks about postnatal psychosis in the audio recording below.



Leila, interviewed above, also experienced psychosis after pregnancy – as well as antenatal depression and anxiety. She talks about this below.

I completely lost touch with reality and was convinced my phone was communicating with me in code Leila

I started to get hyper-manic and the effect that had, in terms of behaviour, meant that I would be wide awake all night. My mind would be racing and I was really driven to do things, for example I would reorganise the kitchen cupboard at 3am to 4am in the morning. I also wrote lists compulsively and used hand gestures, which I don’t normally do … then after that I became psychotic. I completely lost touch with reality and was convinced my phone was communicating with me in code. I thought it might be my father who had died three years previously. I thought I would just will with my mind ordering a pizza and it would be delivered to the door.

Post-traumatic stress disorder

Research is limited but estimates of post-traumatic stress disorder (PTSD) after delivery tend to be around 1-2% in high-income countries. One study in Sweden put the rate of postnatal PTSD at 2% in the first year after birth. While some women experience it after a particularly traumatic birth (with medical difficulties), others have PTSD from the birth process itself.

A spokesperson for the Birth Trauma Association said: “The help on offer for women is very patchy and generally poor. Individual health visitors and midwives may help but waiting lists are long – up to a year – and almost no one gets on a list for cognitive behaviour therapy or other treatment unless they have been symptomatic for at least 12 weeks.”

Bill, Staffordshire

My wife and I experienced the stillbirth of our first child, Andrew. It was very sudden, my wife noticed a lack of movement and we went to hospital. We saw a classic scan, but this time with no heartbeat. I carry the image with me to this day. The following days and weeks were traumatic. We were told that the chances of a future successful pregnancy were higher if my wife delivered Andrew naturally, so labour was induced gently. We then went to a dedicated maternity suite (where we were handled with exceptional care and attention by all staff). The delivery was normal, except that Andrew was not alive.

Following the stillbirth, I experienced post-traumatic stress disorder for which I have since received cognitive behavioural therapy. I had flash-backs of the traumatic delivery and the events immediately before and after, including my son’s funeral. I also suffered from an intense anxiety as we went through four more pregnancies – two ended in miscarriage and two ended inthe births of two wonderful boys. We constantly wondered about miscarriage, stillbirth and the chances of a good outcome. The mental health problems affected my work – I was constantly on high alert. On the whole the NHS was marvellous. Their care when we lost Andrew was excellent in the circumstances. My wife got support during the pregnancies and for the way in which the stillbirth affected her. However, there was less attention on the father. I was not prepared mentally for the immense impact that this would have on me.

On the whole the NHS was marvellous. Their care when we lost Andrew was excellent in the circumstances Bill

Emma, Midlands

I had a traumatic first birth and my baby was in neonatal care, which left me struggling with what I know now to be PTSD and perinatal anxiety. I didn’t understand what was happening, so tried to carry on as normal. I became pregnant again 14 months later by accident and really suffered. I believed I would die, writing letters to all my family and counting down the days until I would leave this world. I had awful anxiety, flashbacks and was terrified all the time. I didn’t trust healthcare professionals, hated going to the hospital for appointments and didn’t know who I could approach for help. I became a shell, empty and full of fear. I wish that my traumatic birth had been acknowledged and that I had been asked how I was coping in my next pregnancy. I wish that there had been counselling, more information around having a difficult birth. I wish I’d just been asked how I was, not physically but mentally. I wish there had been continuity of care so that I had someone I trusted care for me. It took me 15 years to get a correct diagnosis after the second birth and even then there was no specialist treatment support available.



Obsessive compulsive disorder

It’s thought to affect 2-4% of all new mothers, but – until recently – has received relatively little research attention. Some women develop obsessive compulsive disorder (OCD) for the first time either during pregnancy or shortly afterwards, while others find it makes a pre-exisitng condition worse. This is partly down to the fact that pregnancy is a time of increased stress, with most women becoming concerned about protecting their baby. It is a time of major physical change, which can cause difficulties.



It’s not just down to hormones, however, and some fathers also experience postnatal OCD because of their feeling of responsibility to protect their new baby.

May, Birmingham

I was diagnosed with OCD following the birth of my first child. I was experiencing intrusive thoughts about my son coming to harm (and that I might actually be the one to harm him). I have suffered from recurrent depressive episodes throughout my life.This and the severe anxiety I was experiencing led me to spend a lot of my maternity leave sitting at home, waiting for something terrible to happen. My midwife noticed during my pregnancy that I was feeling anxious and referred me to a mental health clinic at the local women’s hospital. I continued to attend there after my pregnancy and, as things spiralled out of control, I was prescribed antidepressants and given a place in a group therapy session. I was admitted to hospital – in a dedicated mother and baby unit – for two months as things failed to improve.

The care I received was wonderful – I cannot fault it at all. I had never imagined that I might be suffering from OCD, and once I had my diagnosis and began cognitive behavioural therapy, the depressive episodes in the past began to make sense. I was treated with utter respect and kindness both as an outpatient and an inpatient, and have since been able to return to work. I feel very lucky that I had access to this service, and that it was so close to home. I know that this isn’t the case for most women.



• Some names have been changed.



• In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here