I lied on the Edinburgh Test so they wouldn’t take away my baby

When the health visitor came to check on me and asked me to answer the questions on the Edinburgh Postnatal Depression Scale (EPDS), I lied through my teeth because I had a genuine fear that the outcome would be that they took away my baby.

I felt so out of control of the situation that this was a genuine fear.

Apparently, my baby’s behaviour was “completely normal”, so if I showed them I wasn’t coping, maybe they would take her away. And I knew that wouldn’t be a good thing for her or for me.

I decided to look at the questions that are asked on the EPDS from the viewpoint of having a baby with reflux. Because very often, how we feel as parents is looked at in isolation from the events themselves. I can see that with a baby who is not struggling and is sleeping and everything is fine, this test could be a bit of an insight.  

Rather than prattle on, I’m going to go through the questions on the test and put some context around them for parents who have a child with reflux. 

Is the Edinburgh Postnatal Depression Score valid if the baby has reflux?

After each question, I will give you a (biased) view of how this question would be directly affected by the baby's reflux or silent reflux. I will also state what would have been my “honest answer” about how I was feeling, the “actual answer” that I gave.

For complete transparency, the only reference I have for life with a baby without reflux is the first two weeks of my second daughter's life after birth, before her reflux troubles kicked in. And other people’s lives, so my glasses are stained on this one!

Question 1: I have been able to laugh and see the funny side of things

• As much as I always could (0) 
• Not quite so much now (1) 
• Definitely not so much now (2) 
• Not at all (3)

When you’re a parent of a baby who is screaming for hours a day, throwing up everywhere, not sleeping and not feeding well, AND you’re told repetitively by the people you trust to know more about babies that “this is normal”... it’s difficult to laugh and see the funny side of things because there are few funny sides to reflux (if any)

At nine weeks postpartum, I would have scored a three if I was honest. Written score 1

Question 2: I have looked forward with enjoyment to things

• As much as I ever did (0)
• Rather less than I used to (1) 
• Definitely less than I used to (2) 
• Hardly at all (3)

I didn’t look forward to anything because wherever I was going to go, I had to bring my baby girl with me. I was worried about the judgment of others because of her unpredictability to start screaming suddenly and my inability to console her. I was worried about my ability to console her, never mind friends and strangers around me. So no, I didn’t really look forward to anything. In fact, if it involved a car journey of more than 10 minutes, I dreaded it because she hated the car seat so much. 

Honest score 3, actual score 2 (I knew some of the answers needed to be “higher”)

Question 3: I have blamed myself unnecessarily when things went wrong:

• Yes, most of the time (3) 
• Yes, some of the time (2) 
• Not very often (1) 
• No, never (0)

In the beginning, I didn’t blame myself until my baby was 16 hours old. The midwife told me that I needed to figure out how to stop her crying because she was waking everyone else on the ward who had given birth and needed to sleep (honestly, this was what was said to me, and I gave the hospital a glowing review out of fear of repercussions).

During the first few weeks, I asked for help and opinions from midwives, health visitors, and my GP. All of them had the same story that my baby was fine and healthy and had completely normal behaviour. At my 6-week check, my doctor actually said, “Well, I understand the challenges of having a new baby. My son is the same age as your daughter. The crying is something we just need to get used to, or perhaps it’s more about how anxious you are, and that’s why she’s crying so much.” 

With the people who I believed would know better than me, who would know more about babies than I did, the people who were apparently there to support me, telling me that this was my fault… I started to blame myself when things unnecessarily went wrong. Like my baby screaming, my baby not feeding properly, my baby not sleeping.

I didn’t blame myself unnecessarily for the death of Nelson Mandela. But I held personal responsibility for my baby. At this part of my life, and in the seven days previous to this test, all that went wrong was stuff with my baby. So yes, I blamed myself.

Honest score 3, written score 1.

Question 4: I have been anxious or worried for no good reason:

• No, not at all (0)
• Hardly ever (1)
• Yes, sometimes (2) 
• Yes, very often (3)

Suppose we had a diagnosis of silent reflux, or CMPA or anything that was really there. If I felt that I had been listened to by the professionals I sought help from, if I hadn’t been told multiple times that my baby’s unsettledness was because I was anxious, then perhaps I would have known that my anxieties and worries about my daughter were valid. I was extremely worried about her. And with no explanations or acknowledgement of her struggles (which ARE cause for concern), I thought that I didn’t have a “good reason” for my worries or anxiety. However, I obviously couldn’t admit that.

Was I worried about anything else in life? With my baby’s reflux, there was nothing else in my life in the previous seven days.

Honest score 3, written score 0.

Question 5: I have felt scared or panicky for no good reason 

• Yes, quite a lot (3)
• Yes, sometimes (2)
• No, not much (1)
• No, not at all (0) 

My goodness, waking in the middle of the night suddenly realising that my arm wasn’t where I propped it up before falling asleep, sitting up with my baby in my arms, and freaking out about whether she was alive or not? Yeah, panicky. But if I said that, they would ask me about it, and then I would be guilty of admitting to unsafe sleep practices, but we couldn’t sleep any other way.

Honest score 2, written score 0.

Question 6: Things have been getting to me

• Yes, most of the time, I haven’t been able to cope at all. (3)
• Yes, sometimes I haven’t been coping as well as usual. (2)
• No, most of the time, I have coped quite well. (1)
• No, I have been coping as well as ever (0)

My whole life didn’t feel like it was falling apart. Bearing in mind that these scores were supposed to be based on my previous seven days.

Was my inability to get my baby to sleep getting to me?

Was my inability to console her getting to me?

Was her need to feed me every 90 minutes getting to me?

Was her complete bottle refusal getting to me?

Was my observation of all my friends' babies being “better” than mine?

Were the consolation words of “everyone adjusts to parenting differently” getting to me?

Of course, it was. Everything was getting to me.

And the reason that it was all getting to me was because my baby was suffering. My baby girl was in pain every day and every night, and I knew this, yet no one else seemed to listen to me. No one seemed to acknowledge her struggles. So yes. It was all getting to me.

Honest score 2, written score 1.

Question 7: I have been so unhappy that I have had difficulty sleeping

• Yes, most of the time (3)
• Yes, sometimes (2)
• No, not very often (1)
• No, not at all (0)

This question should even be asked to a parent of a new baby, let alone a baby with reflux struggles. Like WTF?

And was my inability to sleep due to unhappiness?

Or due to the fact that I had to stay awake all night to hold her safely or to feed and console her while she cried for hours in pain?

Was I unhappy with my parenting life so far?

Yes, 100%. This was nothing like what I had expected. I actually questioned our decision to become parents. We had no joy in the extreme suffering that we were living with.

Did I have difficulty sleeping?

Yes, I did. 

I’m pretty confident that my unhappiness was not contributing to my difficulty in sleeping. So on this

Honest score 0, written score 1.

Question 8: I have felt sad or miserable

• Yes, most of the time (3)
• Yes, quite often (2)
• Not very often (1)
• No, not at all (0)

My life had been turned upside down. We had prepared for life to change, just not on the scale that it changed. And I spent most of my time being absolutely miserable because, according to the doctors, there was nothing wrong with my baby. It was me. And so I started to believe that I had messed up my life.

Honest score 3, written score 1.

Question 9: I have been so unhappy that I have been crying

• Yes, most of the time (3)
• Yes, quite often (2)
• Only occasionally (1)
• No, never (0)

I cried a lot with my baby. I cried because I couldn’t ease her pain. I cried because she was asking me for help, and I wasn’t able to help her. I cried because I didn’t know what to do. I cried because this was all my fault. I cried because she couldn’t sleep, and I couldn’t sleep. I cried because the nights felt so long, dark and lonely. I cried because no one else understood. I cried because no one else acknowledged the struggles we were going through as real. I cried because of the constant invalidation. I cried because because because…

Honest score 3, written score 1.

Question 10: The thought of harming myself has occurred to me*

• Yes, quite often (3)
• Sometimes (2)
• Hardly ever (1)
• Never (0)

Never. Never, ever, ever. I was able to answer this the same then as the same now.

Honest score 0, written score 0.

Honesty in Maternal Mental Health Assessment

My honest score would leave me with a score of 25. Do you know what that means?

While the EPDS is apparently not used as a diagnostic tool, it kind of is. With this level of honesty, can you see how I might have been scared to admit it?

I knew I wasn’t depressed in the traditional sense of "no apparent reason". I was exhausted; I knew that my daughter was in pain. I knew that my  instincts were right, and I was being invalidated at every turn with every request for help.

And yet, the exhaustion and worry for my daughter DID cause depression, and it was in the post-natal period, so yes, it was postnatal depression. And this is not to say anything negative about any of the people who genuinely struggle with depression, however, better support for our babies would result in fewer parents experiencing PND. Especially when our mental health is so closely connected with sleep quality alone.

Load extreme sleep deprivation with worry and gaslighting from the people we trust the most. We have a cocktail for depression that the medical community are fuelling rather than managing or reducing.

On the real test, my answers scored 8.

I was well below the range of “scoring above 12 or 13 to be likely suffering from depression and should seek medical attention.” [Reference]

Where does the problem lie?

Is the problem with the mothers? Or with the ignorance of babies who are struggling with reflux?

Believe me, I fully understand that people who need mental health support should be able to access it, and they should be able to access it without fear of consequences. I honestly do not know if my fear had any grounds, however, the way that I was not supported by my baby and my actual experience of life being invalidated gave me zero confidence.

I had already shared with my doctor how I thought my daughter was suffering, and he blatantly ignored me. I felt like a “neurotic” mum. I have heard multiple times from clients and friends over the years that they have overheard this term being used by healthcare professionals.

New mums are not neurotic.

New mums know more than the medical professionals give them credit for.

A huge leap forward in supporting yourself will come from supporting your baby. I witness this with clients all the time.

Clients who feel that they themselves are spiralling out of control because they see their baby struggling to live the experience with them and are told, “There’s nothing wrong with your baby”, and their gut cannot believe this. All these parents want is answers.

When I speak with clients, when people go through my workshops on reflux, it’s like “turning the lights on” (words from a client). They can see what is going on for their baby, they can understand the direct connections between symptoms and behaviours, and they feel confident that they have a plan. When this plan starts working and providing positive changes within days… the sleep starts settling, the baby starts settling, and suddenly, life becomes brighter.

I would love to know. What has your experience been?

The connection between reflux in babies and maternal mental health, and indeed paternal and parental mental health, needs to be taken seriously. And when we listen to babies and support them properly, suddenly, we are going to get a huge drop in maternal mental health.

If you work with babies, click here to see the new training on mental health awareness, how reflux really impacts the people you work with and how you can learn how to support these parents without causing more harm, even if you cannot answer the reflux issues.

I ask the question… is it really depression, or is it a reflection of your baby’s struggles and the lack of support that is widely unavailable?

If this strikes a chord with you, please share it.

https://med.stanford.edu/content/dam/sm/ppc/documents/DBP/EDPS_text_added.pdf