Are you ok? Ja, Fine (not fine)

Yesterday my mother enthusiastically skyped me and asked me to listen to a radio interview she has heard from a lady called Allison Mcullough who had written a book about women in New Zealand that have post natal depression (PND) and how they found services in New Zealand to cope with it. The book was called Fine (Not fine). She also had conducted interviews with women that I listened to yesterday to see if I could draw connections with how they were feeling.

I ended up not sleeping at all last night thinking about ‘how did I get here?’ and the steps I was taking to control it. This is my story on post natal depression  and why I believe it was inevitable and that there was nothing I could do to avoid it.

On reflection, all the red flags were there but I was so hell bent on having a baby that I chose to ignore them.

The first was that I suffered a small bout of depression when I was 20. For 2 months I cried for no particular reason and it took a lot of counselling and exercise (no drugs) for me to come out the other side.  I focussed on routine and being part of a competitive women’s volleyball team to help me not to isolate myself and exercise and be healthy.  This was over 16 years ago so I believed it was something that would not happen again if I continued to exercise and be part of teams, groups and be healthy.

The second was that we were having IVF. Most women that have PND have had IVF.  IVF for me bought a whole range of complications, emotions and struggles that made unrealistic expectations of what motherhood would be.  In fact the more time we spent trying to have a baby the more I thought my/our life would have a purpose if we had a baby and we would be more fulfilled and we wouldn’t be missing something.

We also have another complication where my husband has a recessive eye disease. We have a 50% chance of our child being blind.  We were not prepared to give our baby a start in life where they wouldn’t be able to do things that other children can expect to do.  This meant three terminations after finding out that all three embryos had the disease.  This also prompted us to go to Spain to get IVF with pre-genetic selection to implant an embryo that didn’t have the disease.

The fourth factor was that I had no support. There are no Mothers groups in the Netherlands and my efforts to find other Mothers were hopeless.  My family lived on the other side of the world and weren’t coming over to help.  My husband’s family were great but we are still not connected due to my inability to learn Dutch well.

Most women that have post natal depression have had a traumatic birth and this mismatch of expectations of a birth versus what actually happens causes possible problems. I didn’t.  I knew I was going to have a C-section and I was fully prepared for the C-section recovery.  This is not the norm in the Netherlands where they still favour natural births and mid-wives.  My doctor was understanding and he agreed he didn’t want to take the risk of something going wrong with a natural birth and we agreed on a date for the Op.

I found there is so much focus on the actual birthing process rather than the ‘what you should expect’ in the first few weeks with a baby. I would take a C-section every day over the feeling I felt for the first six weeks of my baby’s life.

My baby had feeding problems and we were sent home after a day without anyone really monitoring if he could drink. He struggled to regain his birth weight and was crying non-stop.  In hindsight he was probably starving and just couldn’t get enough to drink.  At 6 weeks he was re-admitted to hospital to get a feeding tube and to force him to gain weight.  This also was the start of the doctors trying to discover what is wrong with him.  After 6 weeks of no sleep we welcomed the respite the hospital provided us and I didn’t give much thought as to the possible ramifications of not feeding well.

My baby was subjected to endless tests. Urine tests, sweat tests, blood tests, ultra sounds, MRI’s, genetic testing and then whole exome sequencing.  It was ironic that we had done everything possible to give our baby the best start in life yet there was something wrong and it was out of my control.

The only thing that we could label him with was Tracheomalacia. A mild breathing problem that the doctors said he would grow out of by the time he was 2.  It was more of an annoyance for the doctors but caused us a huge amount of anxiety as this breathing problem is associated with poor feeding and sleep apnoea which can be fatal.

At three months I had taken to crying when anyone asked if I was OK which I quickly buried and said I was fine. I busied myself with long walks, hospital and physio visits.  This continued for the next two months.  The crying became more frequent and by the time my son was 6 months I acknowledged I had a problem.  I spent all night awake researching possible syndromes my child has and then by day I was tired and cried most of the time.  My husband was worried about me and we decided I needed help.

I made an appointment with my local GP who clearly saw a blubbering mother and promptly gave me a list of psychologists in the area and then said “Good luck in finding one that speaks English”. I found one that had actually lived in New Zealand and could understand my lack of openness due to my culture.  At the same time we were referred to the Early Intervention centre as it was becoming more obvious that our child would have special needs because he was missing his milestones.

The early intervention meeting I came away from feeling rather disappointed as I was expecting to be offered more services like physio and special education and help with my baby. Instead they took a let’s wait and see approach.  I managed to cry through the entire meeting and the psychologist there flagged me for needing special Mother and Baby sessions where they would teach me to be mindful and present with my baby rather than worry about his future.

At 8 months, I was still working 3 days a week, and every day off was filled with doctor’s appointments. I also managed to become pregnant again.  This was originally the plan to give my son a brother or sister. Instead of bringing joy it brought a whole new round of anxieties.  At a paediatricians appointment she said she expected the full genetic sequencing to come up with a syndrome and she would be very surprised if they didn’t uncover one.  Then she added even if they come up with nothing it doesn’t mean it isn’t an undiagnosed genetic syndrome.  I hoped they would find something as then we could have an idea how to manage it and I could stop my late night researching on the internet.  It also meant we could test for it with the new baby.  Two days later the geneticist called and said after the most in depth testing they could do, he doesn’t have a syndrome.  He won’t even get Alzheimer’s.   Instead of being happy with this news it just brought about a whole new range of uncertainty and anxiety that I couldn’t cope with.

I decided not to have another baby due to the fact I couldn’t cope with one child with special needs, what if I had another with special needs? This was a big decision as being in my late thirties I am essentially deciding I will never have another child. My husband is an endless optimist and firmly believes there is nothing wrong with our baby and he is just delayed due to his feeding problems at the start.  He is frustrated at my doom gloom but is supportive in directing me in the right direction for help.

During the time I was pregnant I also experienced awful morning sickness and I basically withdrew more and didn’t/couldn’t leave the house for a month. I would put a brave face on at work and just hold it together.  I would then cry all the drive home!  This week I don’t have morning sickness, I can start exercising again and my husband’s parents are back from holiday and we can finally use them as a babysitter when we need help sometimes.

I know at 9 months on.. I have a long way to go with getting over PND. I have a lot of services available to me and I will use them all!  I still have a lot of hope for my sons future but it is buried under uncertainty from endless hospital visits.  This uncertainty has robbed my happiness of being a mother.  I am also angry at myself at allowing my son to feel my unhappiness and I worry his future will be effected by it.  All I can do is take one day at a time and hope it gets easier.

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5 thoughts on “Are you ok? Ja, Fine (not fine)

  1. That sounds like a lot to deal with. No wonder you’re feeling exhausted and stressed. I think firstly you have to stop blaming yourself. Your son is very young and hopefully won’t remember this time! And you’re doing your best. If you have recognised you have a problem that is the first step. And although it is difficult to find others, perhaps you will be able to find people online to connect with? You have the blogs and maybe you could find a Facebook group that would help too. Wishing you luck. Xx

    Liked by 1 person

    1. Thanks Nara, I’m trying hard to not use social media and the Internet so much! I think it sometimes doesn’t help things. However due to lack of real people I can connect with here in Holland , perhaps a Facebook group or something similar is a good idea!

      Like

      1. Yeah, I really cut down on social media in terms of changing all my settings / unfollowing people. So I generally only interact with certain people in certain groups. I think if you can use it in a useful way it can be quite a good thing! X

        Liked by 1 person

  2. Depression is such a terrible and consuming disease, but it is curable, and you will get through it. You will be fine. (I’m really glad that you have found a therapist who speaks English!) And don’t worry too much about your son being affected by your depression: you are caring for him, your husband and your husbands family is there too. You have gone through so much, and being far away from your family’s support – that’s a lot to cope with! Be kind to yourself – and yes, it will get easier, one step and one day at the time. xx

    Liked by 1 person

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