#DiversityInLoss – there is no support offered to men who have lost a baby

Although increasing, there is a constant need for hear more from dads who experience pregnancy, baby and/or child loss. I know just how appreciated every single dad speaking out about baby loss is. As one dad can not speak for all dads out there, everyone sharing their perspective must be support and welcomed. Alexandra’s dad, Andrew wrote about his experiences speaking at the Leeds Bereavement Forum and has kindly allowed me to re-share it here today. He speaks candidly and lovingly about being Alexandra’s father.

Please welcome Andrew and his daughter Alexandra to the #DiversityInLoss series…

I recently had the privilege of speaking at the Leeds Bereavement Forum about my loss of Alexandra. The forum was focusing on men and how they dealt with bereavement, hence the invitation to speak. Here is what I said:

What is the most difficult question? If you are of a mathematical mind, you might think the most difficult question was, “What’s the cube root of 27,394?” If we took a more philosophical viewpoint, we might consider the most difficult question to be, “Why are we here?” Or perhaps, “What is the meaning of life?”. Or perhaps even, “What exactly is the point in Love Island?”.

Personally, the most difficult question you can ask me is “How many children do you have?”. Now each time I get asked this question, I assess whether I think I’ll ever see you again. If I think it unlikely, perhaps you’re a bus driver or a shop assistant for example, I’ll tell you I have one child. If I think it likely that we will meet again, or I want to get better acquainted, I will tell you I have a little girl at home, but we lost our first child.

So what happened?

Claire and I got pregnant very quickly and easily in December 2014. The pregnancy itself was very uneventful, all scans and tests came back as normal and there were no “red-flags” to speak of. Claire had the usual pregnancy problems of being tired, hungry and emotional but nothing that isn’t “standard” pregnancy fare. We discussed potentially having home birth since the pregnancy was a “low risk” and the NCT made it sound great fun.

We did the standard “new parent” stuff; we went to NCT classes. One of the memorable moments was discussing our biggest worries. For me, I worried we’d have no money. Claire worried she’d be stuck at home all the time with the kid and the dog and we both worried about the lack of sleep.

We bought equipment cautiously since both my parents and Claire’s parents had suffered miscarriages and didn’t want to “count our chickens”. Still as the pregnancy moved on and baby got bigger, we relaxed and started planning the future. Claire’s due date was the 14th of September and as the midwife was unconcerned when that date passed, so were we.

We had an induction booked for the 29th of September if Claire didn’t go into natural labour. On the 28th of September, Claire complained of reduced movement so to be on the safe side, we went over to LGI. Claire was attached up to a heart rate monitor and a strong stable heartrate came through. We were both hugely relieved. As we were due in the next day to be induced, it was agreed that we’d go downstairs to the delivery suite and get induced now. We went down to the birthing suite and were connected to another heart rate monitor. On this new monitor, the heartrate didn’t come through quite as strongly as it had done on the original machine. We were seen first by a junior midwife, then a senior midwife, then a registrar. In my experience of hospitals you really don’t want to see the senior staff, that means something is “interesting” and that usually means “bad”. They staff attempted a sweep to induce labour, but this didn’t work so we were told that Claire was going to be having an emergency C-Section.

It was horrendous waiting outside the theatre whilst they prepped Claire. The staff came by and told me to try and not worry but it didn’t make any difference, I was scared stiff. When I was let into the operating theatre, I was positioned at Claire’s head. After a short amount of time, the surgeons pulled Alexandra out. I was beckoned over to take a look at our new daughter. What really stuck me when I first saw Alexandra was how doll-like she looked. There was a very good reason for this that we were shortly about to find out.

One of the doctors said that they just needed to give her a hand to breathe. It was at this point that things started to go wrong. I sat back down next to Claire but was aware of how many additional medics were coming in to help Alexandra. I could hear “1, 2, 3” and “adrenaline” and I knew, they were performing CPR and trying to save her. The team managed to get her heart beating again and I naively thought we were out of the woods. She was taken off to the NICU unit and it was at that point one of the consultants came through and delivered the worst news I think a parent can hear, “We’re very concerned about your daughters brain.”

Professionally I work as an engineer and I spend my time fixing problems. Generally speaking, if I commit my brain to a problem, I am usually able to solve it. This was one of those problems that I was not able to do anything about. I have never felt as utterly useless as I did when that consultant told me about Alexandra’s brain.

We had a terrible night’s sleep and the staff told us to get our parents down to meet her. I am certain now that they knew the odds of us having a happy ending were vanishingly tiny. Telling my Dad and sister that they needed to come down as fast as they could and that Alexandra had suffered a trauma as she’d been born were some of the worst conversations that I have every had to have. I can’t imagine how bad the drive down from Aberdeen to Leeds was for my parents, I wouldn’t wish that on any one.

At the end of the day on the 29th of September, we went to bed knowing that Alexandra’s brain activity had to improve for there to be any hope of a “normal” outcome. We awoke early on the 30th and went down to the NICU to see if there had been any improvement in Alexandra’s brain activity. We asked the nurse if there had been any improvement, she said, “There has been no improvement”.

It was really at that point that we gave up hope of any sort of “normal” outcome. We knew that Alexandra was very likely to be extremely ill and severely disabled, if she lived that long. We had a discussion later on that morning with the consultant about what to do. He told us that from the evidence they had seen from previous babies in a similar situation to Alexandra, it was very unlikely she would be able to see, to hear, to taste, to touch or to smell. Essentially she would be utterly unaware of the world around her.

I have always believed that life is the sum total of your experiences so could you even classify it as life if you had no awareness of anything? It did bring in dark thoughts to both of us about how she would be unable to tell us if she was scared, or in pain. We’d have no way of telling her that we cared. It was a dreadful discussion.

We agreed at that stage that we wanted to move from an intensive care plan to a supportive care plan. This meant that rather than doing everything possible to keep Alexandra alive, if she decided that she wanted to go, we would let her.

We also discussed organ donation. Claire and I are both passionate believers in organ donation and it was very important that her little life contribute some good to the world, even if she was only going to be here for a very short period of time. At the end of this discussion, we knew that it was not going to be a case of “if” Alexandra died, but “when”.

She passed away on the Wednesday evening, having decided that she wasn’t going to fight it. Death is a strange thing to witness, there was no dramatics, she just gradually became weaker and weaker before finally passing away.

When someone dies, a doctor has to come and certify the death. What really struck me about this was when our doctor came in to certify that Alexandra had died, she was in tears. I found this astonishing given she must deal with babies dying all the time; I think it is very easy to forget the medics are humans first and medics second. Her sadness will stay with me as long as I live.

We went home on Thursday morning. We went back to an empty house having been through the worst 48 hours in our lives. The house was exactly the same, except it was no longer full of the promise of a new beginning, merely a reminder of what we had missed out on. Thankfully, my in-laws had put dust sheets on the cot and all the other baby equipment (we didn’t feel that upset seeing any of this stuff because it was never “her” stuff, it was just baby stuff).

What nobody tells you about grief is the physical symptoms and how they affect you. I remember finding my heart physically ached; at times I wondered if I was going to have a heart attack and didn’t think I’d have been that bothered if it did happen. I remember having a vivid dream where I was holding her hand. When I woke up, I was holding my own finger, just like you might hold an infant’s hand. People will often remark about babies, “Is there anything worse than being woken up all night?”. The short answer is, “Yes. Not being woken up at all.”

We had to arrange Alexandra’s funeral and to do that, we had to go back to the hospital, back to the ward and pick up her hospital death certificate. As we left the hospital, we passed a man, possibly in his 50s who was sat at the top of the stairs in a wheel chair. Behind his wheelchair he had oxygen tanks. He was clearly very ill and what was he spending his time doing? He was smoking a cigarette. He was given the gift of life and my daughter wasn’t and that’s how he spends his time? Little did he know but it was a close run thing he wasn’t pushed down the stairs by me.

The funeral itself was well attended by friends and family although only 1 of my 3 Uncles came. I have 7 cousins but only 1 attended. I guess it shows what their priorities were. One Uncle later claimed he didn’t know the date. One has since acknowledged that not coming was a mistake.

One of my friends who works with special needs children had mentioned about the size of the coffin. In your head you imagine a standard coffin when a person dies but when a baby or a child dies, often they are in a much smaller coffin. I was really glad that she mentioned this because I think the shock wouldn’t have been good on the day.

After the funeral, Alexandra faded into the background of other people’s lives, but not ours. She was always there. Always the child we were not allowed to love properly. For us it felt that the clock had stopped on the 30th and we couldn’t understand how other people carried on with their lives.

I went back to work to run away from my own thoughts (work at the time was chaotic and never gave you any time to think about anything so it was perfect escape from thinking about my missing child). What amazed me is when I started to talk to people at work there were 3 different people who had all experienced similar losses in their own lives. Given this was a firm of 50 people, it seemed a lot more common than I had originally thought. One colleague’s son had lost a baby, one his brother and another had had 5 miscarriages and never managed to have any children. The scale of the problem (1 in 215 pregnancies ends this way) was terrible and I wanted to know why nobody was speaking about this.

We got counselling from Martin House as neither Claire nor I knew how to deal with the thoughts in our head. Thankfully, the counsellor came to us, rather than us having to travel anywhere.

As time moved on from the funeral, the rest of the world seemed to go back to normality. As a grieving parent, you don’t. You are stuck in time in a kind of limbo, between needing to try and heal and not wanting to let anything change. Every single week it seemed that one of our friends was falling pregnant and having a baby shower. We turned down baby showers and Claire unfollowed new parents/parents to be as it was all too painful a reminder of what we didn’t get.

We were lucky, we got pregnant again 4 months later in February 2016.

We had a review in January with the consultants on what had possibly gone wrong with Alexandra. The consultants said that the placenta showed some evidence of VUE which is Villitis of unknown etymology. I asked what could we do and was told that VUE is undetectable without destroying the placenta, untreatable and unavoidable. They might as well have told me it was the boogie man, it would have meant the same to me. How do you deal with a problem that might come back but you’ll have no way of knowing, no way of helping and no way of stopping?

I was out walking the dog and I noticed a blue car and it made me realise that I knew nothing about Alexandra. Was blue her favourite colour? Did she like big cars? Did she like little cars? What was her favourite soft toy? What did she think of our dog? This is one of the things about losing a baby (rather than an older child or relative); babies are essentially an unmarked vessel with so much possibility on who they will become and what they will grow into. A baby you lose never fulfils any of these things so you end up knowing nothing about them. There are very few shared experiences to allow for common memories.

What was really amazing was other people’s behaviour towards us. I did a sponsored bike ride and Claire sent a message out to all the family asking if they could sponsor me. My cousin replied that she wasn’t going to sponsor me for some waffley reason and  “she had sponsored me last time”. As in last time your child died. To be as privileged as her…

We were at a Catholic wedding and the priest started spouting on about how babies were, “Stained with original sin”. If it hadn’t been a good friends’ wedding I would have stood up, told him what I thought of him and made him look at a picture of my “stained” dead child.

I was at another friends’ wedding, telling the story of what had happened and as I started retelling what had gone on, one of the people in the group walked away. It is hard to take when your own story is too upsetting and real for other people.

Ophelia McLennan was born in October 2016 and life, finally, moved on.

Some general observations I have made during this experience. There is no support offered at all to men who have lost a baby. This is ludicrous given men grieve just as much as women do and need support and help coming to terms with it.

Nobody talks about losing children. The number of people who this has happened to and who are still carrying the scars is massive. Yet as a society, we don’t speak about it. People need to know about it so that we can try and improve the odds and treatments available to us.

When we agreed for Alexandra’s organs to be used, we were told that because of the massive organ damage she had suffered, they could only harvest her heart valves. We found out that both of those valves have since been used, both at Great Ormond’s Street. I like to believe we gave someone the best possible present that year, even if it cost us massively.

The NHS throughout has been fantastic. The staff were patient, caring and passionate. They deserve better than their politician overlords.

We raised about £9,000 just after Alexandra died and we donated this to the NICU unit at LGI so that they could hopefully get some more stuff to help other babies. They have used this money to buy O2 blenders and sun lamps (which Ophelia needed when she was born).

So what does the future hold? I will always remember her, part of me was left behind on that 30th of September and I will always react badly to triggers involving loss of children. We have ended up being different parents than I thought we’d be, I’d always imagined that we’d be very anxious as parents given what had happened. In actual fact, we’re pretty relaxed because we have seen what the worst outcome can be.

The strangest feeling of all is that although I miss her every day, I wouldn’t necessarily change the outcome. I would not give up getting to know Ophelia and I know that it would have been very, very unlikely that we’d have had two children that close together.

I would like to end the talk finishing where I started, “Don’t be afraid to ask how many children someone has, just bear in mind you may be asking them the most difficult question of all.”

To read more about Alexandra’s story, visit her parents blog, here.