I ALWAYS FELT life was a series of tests, examinations of who you are as a person, another chapter for everyone’s own unwritten autobiography, but once you enjoyed the ride then you were doing ok.
It was the morning of 1 August 2020 when we found out we were expecting our first baby. A feeling of incomparable excitement and joy. My wife Emma and I were together for over nine years, married for two and a half. We had kind of tried for a baby before, more of a let’s see what happens, rather than a concerted effort to get pregnant.
We took a break to do a little travelling, travelling that had been cut short by the pandemic. So the time felt right to now really “try”. A more structured approach, I suppose.
I think we both assumed it would take a lot longer than it did, I mean nothing had happened previously, but no, after only a few weeks we were staring at a positive pregnancy test.
We were beyond happy, this was a different level of happiness. Telling our family and friends was as much a relief as anything. We have some very close people in our lives and to hold that secret for what seemed a small eternity was very difficult.
When we finally could share the news it was instantly some of the happiest moments we have ever had. The genuine delight and love we received was overwhelming. Everything was coming together for us. Our life was far more perfect than I had ever thought possible growing up.
The scan
As we drove into the maternity hospital for our 20-week scan, I wasn’t worried or nervous in the slightest. I was nervous at 12 weeks because that was our first. There was always the fear that the doctor would look at us with a puzzled face “eh there’s no baby in there”. Thankfully though, that didn’t happen so I thought the 20-week scan would be an opportunity to get a new photo more so than anything else.
I wasn’t allowed to attend the scan given Covid-19 restrictions so I was waiting in the car parked out front of the hospital. Emma had said she would video call me when she was inside so I could hear the heartbeat and see our baby moving on the screen.
The longer I had not heard anything the more anxious I became, but I still did not think anything would actually be wrong.
Then the phone rang, Emma’s picture popped up and there was instant relief. I answered and Emma sounded ok, oddly calm considering what was to come.
Listen don’t panic but there is some issue and they want to see us together with the doctor.
My heart sank. Immediately every scenario I could possibly conceive was racing through my mind. Did our baby have a disability? Down syndrome? Was it physical or mental? Was the problem with Emma? Was the whole pregnancy going to be a different challenge now? While considering all these different situations, I never once considered what we were actually about to face.
With the restrictions I still was not allowed to enter the building until the moment Emma was called to see the doctor so I had to stand outside the front door. It was a particularly cold November afternoon but I was far too stressed to notice. When we were brought in and the doctor started scanning Emma again, things seemed to be going well. They started with measuring the baby’s arms and legs and checking all that side of it. The doctor would say “that’s perfect there” and “that all seems fine”.
Then suddenly there was a silence. The reassuring had stopped. There were two doctors in the room and they were clearly having the same concerns, pointing at the screen and quietly confirming to each other what they were looking at.
I was holding Emma’s hand. We didn’t look at each other but we both knew this wasn’t a normal pregnancy complication. When the doctors finished the scan, the lead doctor seemed to be building herself up to speak to us. I noticed she was squeezing and fidgeting her hands. She seemed extremely nervous. It was always clear to us both that she was an incredibly genuine and caring doctor and this part of the job would never be easy for her.
Devastating news
“Unfortunately there is a quite significant issue with the brain. There is a lot of fluid and although we can only see so much on this scan we can see it is substantial”.
My head sank into my left hand, my right was still holding Emma’s. Again my mind starting racing. What did this mean for our baby? What sort of life would they live now?
Then she continued, “We will need to do an MRI to get a better picture of what we are looking at before discussing what option is best to take going forward including whether or not to continue the pregnancy”.
That moment will forever live with me. The moment we realised our baby may not survive whatever this was. My hands were shaking, I had tears in my eyes and the most agonising lump in the back of my throat.
We all had masks on which suddenly felt a lot more constricting. I was trying to listen to everything the doctor was telling us but at the same time, nothing felt real. Surely this was a mistake. An MRI was scheduled for Monday so they could get a better idea of how bad this was but we were under no illusion that this was most likely a worst-case scenario.
The next few days were beyond difficult. We tried to prepare ourselves for the worst. You still had hope, albeit we knew there wasn’t much to cling onto.
My mother died when I was 16, the toughest moment of my life, but dealing with a loss like that was a lot more straightforward. You knew exactly what had happened and although devastating, you could face up to it. This was different. Anybody that has children will understand the bond and connection you build before you even meet them. It’s something I certainly didn’t appreciate until now.
Alobar Holoprosencephaly
Emma had the MRI on Monday and we went in on Tuesday to hospital. Again I wasn’t allowed in until Emma was called but I went into the café on the ground floor and there was a row of empty seats in the corridor, so I waited there.
When we were called in there was four people in the room, three doctors and a foetal medicine midwife. You could tell who the main doctor was. He was sitting there, very relaxed, legs crossed, coffee in hand.
We have learnt that in Ireland every doctor, nurse and midwife you meet is a bit of a coin toss in how they will treat you. Some have an incredibly gentle and empathetic manner and some simply do not. This doctor did not.
He started by asking Emma what she understood so far. Emma began explaining what we had been told the Wednesday before but was very emotional. I can only presume he was trying to gauge how much we knew before he began explaining how bad things really were, although at the time I was quite annoyed. I said, “we’re here for you to tell us exactly what is wrong, not to guess ourselves from last week’s scan”.
We also asked that no one sugar coat anything for us. We wanted to only hear facts and options for dealing with those facts. No false hope.
In fairness that is exactly what we got. He was straight and direct, albeit cold in his diagnosis. This was a worst-case scenario. Alobar Holoprosencephaly, the most severe form of this condition.
We were told that our little baby’s brain was not developing as it should. That it was very unlikely they would survive labour and would be born still born. In the unlikely event that they did survive their birth, it would probably be only minutes or hours before they passed away and that time would be spent struggling to breath.
And in the even more unlikely event that our child lived any amount of time, and best we could hope for would be about a year, they would never be able to move their arms or legs, never be able to speak, never be able to feed by themselves and at no point would they ever recognise us as their parents.
That’s the part that hit me hardest I think. Our baby would never recognise us, never be able to build any sort of bond with us. Never be able to love us. The doctor actually said it would be like holding a doll.
We had prepared ourselves for the worst possible outcome but you are never ready to hear it. Our hearts had just shattered but we were still trying to think of what questions we needed to ask. I asked what other couples in our situation have done and if they had ever seen people with this diagnosis go on to have children with any quality of life. We were told most couples in our position would have a compassionate induction of labour.
The general feeling was that our baby would not survive the pregnancy and any time that they did would be spent struggling to breathe. We had discussed that possibility before we went in and we were both on the same page that we didn’t want that for our baby.
‘You’ll have to go abroad’
It took me a moment to process that. “Do you mean we would need to go abroad?”,
“Yes,” she replied. Then there was a silence in the room. I looked at Emma. I nearly felt like laughing. What was going on? How was this happening? This is Ireland. We’re a liberal country. We just had a referendum for exactly this. I voted for it. I remember the celebrations when it passed. Turns out that only addresses pregnancies up to 12 weeks. Issues like ours would never be diagnosed that early.
Obviously, there are extreme cases like rape and incest but in all reality the referendum the country passed and applauded protects people with unwanted pregnancies. No help to us, a couple with the most wanted and loved unborn little baby who had been dealt the cruellest of hands.
We were given some information about contacting King’s Hospital in London and then we left. Heartbroken for our baby, in shock at what we had to now face, but also angry. Angry that we had to travel to England during a pandemic, angry that we couldn’t be looked after in our own country, angry at the government, angry at the Catholic Church.
As things transpired it would be three weeks before we could get an appointment in King’s Hospital. The intervening time was extremely difficult. We had planned on waiting to find out the sex but we asked and they told us we were having a boy.
We called him Riley. We had some great support but not all our family and friends fully understood the severity and reality of our situation. There is nothing that can be said at a time like this to make anything better, but there is plenty that can be said to make things worse. A lot of people focused on the fact that the issue should not have any bearing on future pregnancies.
Of course that was a huge relief to us but in no way did it replace this baby. Our baby. Baby Riley. If a couple lost a six-month-old or a one-year-old you would not say at least you can have more children.
We know people mean well and we were never angered by comments like that but they still hurt. Did people not consider Riley a real child? Another challenge was to try and prepare ourselves for what would inevitably be the most difficult week of our lives.
Making the journey
As the man in the situation, I know whatever pain I am experiencing now is only the prelude to what is to come, but nothing compared to what Emma will suffer. Throughout those few weeks, watching the physical toll Emma experienced was at times almost too much to endure. I wanted to take that burden away from her, I wanted to protect her from it but all I could do is watch, hold her hand, try to encourage her and tell her how proud I was of her.
You feel helpless and hopeless. Emma never once complained of the different procedures required. She was determined to do all of this for Riley. She even refused any drugs during the labour in case they made her in any way hazy or dazed for the short time we had to spend with our boy.
We booked flights and accommodation and tried to organise a funeral and cremation for Riley. Planning your child’s funeral is incredibly unnatural under any circumstance, but to organise one before you have had the chance to meet your child, to hold them in your arms, it is something I would not wish on anyone.
This turned out to be more complicated than you would think. Emma would be induced on 16 December but it did not give any guarantees as to how long the labour would take. It could be an hour, a day, a week, we had no control over that bit. We booked the funeral for Friday morning, they didn’t do cremations over the weekend.
We hoped Riley would arrive in time and we could get home to Dublin on Friday night. This worried me a lot. I was worried that Emma would be stressing over the clock throughout her labour and she didn’t need that added pressure. These were long days. We weren’t sleeping much but when we did manage to get some, waking up was horrible. There was an initial couple of seconds when your mind is still blank.
Then when everything came flooding back, your heart would sink into your stomach again. I wasn’t eating much and exercise was non-existent. I had recently started a college course too which was put to one side for now.
While we tried to organise what we needed for London and process how we had found ourselves in this position, Riley was still kicking away. We tried to cherish those moments, I was intent on feeling him move as much as possible but they were still very light. I think Emma was extremely anxious for me to feel him kick too.
We flew over to London on Sunday, we were scheduled on King’s Monday morning. The Ryanair flight we got was full. Covid numbers were rising in Ireland but London’s numbers were frightening. When we arrived neither of our phones could pick up a network but we managed to get an Uber to the flat we were staying in.
Traumatic delivery
I didn’t sleep a wink. The following morning we went into King’s Hospital. We knew this was going to be a horrendous day. Riley would be given an injection to put him to sleep before Emma was induced on Wednesday.
Cruelly Emma was put through this process twice as the first didn’t take. Riley had been moving more and more as the days went on and we were warned that for Emma to realise that those movements had stopped was quite traumatic. The Tuesday morning we went to meet with the funeral home.
This again was far from straight forward. We had hoped Riley’s funeral could be planned for the Friday morning but he would need to be registered a minimum of 24 hours beforehand so realistically Emma would need to give birth on the Wednesday or through the night Thursday morning.
We did not have time to go into King’s on Wednesday, we were asked to ring up first thing to see if a room was available. In reality, we may not have been brought in until the afternoon or evening. We kept our booking for Friday morning but if that wasn’t possible the next slot wasn’t until the following Wednesday.
We know a lot of people that have had to travel to the UK, for this reason, have come home and then returned at a later date for cremation or to collect ashes. Neither of us wanted this. The thought of leaving Riley was too much and with Covid, there was no guarantee when we would be able to get back. The UK had announced London was going back into lockdown on Wednesday and all hotels would be closed. It felt like everything that could go wrong was going wrong.
The bereavement midwife in King’s is a lady named Sarah. She was brilliant, really did everything she could to help us through this and understood the difficult position we were in with Riley’s funeral. She called us on Tuesday evening and asked if we were interested in coming in. We jumped at the chance.
The extra time might give us the opportunity of getting home on Friday rather than staying in locked-down London for a further five days. We threw our bags together, called the lady we had rented the flat from and went into King’s that night.
They give you a little card with a butterfly on it. The butterfly is the international sign for stillborn and everyone in the hospital know when they see it, that this couple are going through a difficult time and to look after them straight away.
When we arrived we showed it to a nurse at reception and we were brought straight upstairs. I had gone to the shop on the way to the hospital, we didn’t know how long we would be there and I wanted to get water and chocolate and a few bits to snack on. On the way upstairs with the nurse, the bag of snacks ripped. A fruit cup burst and had spilt over everything. I’m not usually someone that gets flustered easily but it was the first time I felt things were getting on top of me.
I was trying to get all the bags together and I could feel tears coming. Thankfully, I managed to compose myself and I was fine a minute later. I felt a lot of responsibility to get Emma through the week in England and to get her home safe with Riley. That was the only point I nearly broke. Over a fruit cup, but fortunately, I held it together.
When we were brought into our room there was a picture of a butterfly on the door. That was to inform everyone this room was a special case, and not to enter without speaking to whoever was assigned to look after us. That person on our first night was a midwife called Jess.
I’m not a spiritual person but I do believe if Riley is looking after us the first thing he did was send us Jess.
She was incredible. Realistically it probably wasn’t just luck that she was taking care of us, I would not be surprised if she is was assigned to all of the difficult cases that come in during her shifts. She helped us so much during that first night. We could not have felt better cared for. I really feel indebted to her now.
They began inducing Emma at 11:30 pm that night and then all we could do is wait. After 24 sleepless hours, thankfully with Jess back beside us, Riley was ready to arrive. About 15 minutes earlier Emma was told by another doctor that she was only two centimetres dilated and that we had a long way to go. Emma was positive this doctor was miles off the mark and that proved correct.
Saying goodbye to Riley
Riley was born sleeping at 16 minutes past midnight on Thursday 17 December. The mixture of emotions is hard to describe. I was so incredibly proud of Emma, and of Riley, but obviously, it was so heartbreaking to meet my son under these circumstances. There was an eery silence, no crying, not from Riley anyway.
The overwhelming feeling for me was just being in complete awe of my little boy. We had read a lot about what we could possibly face when Riley was born but he was perfect. A perfect little face, perfect little hands and feet. I couldn’t be more in love, with my wife and my baby boy.
Jess helped us dress Riley and take a whole load of pictures. I was on a mission to get as many as possible but of course, now I wish I had taken more.
I guess that would be the case no matter how many I had taken. They also made little foot and handprints. We had bought two small stuffed elephants, one for Riley to have while he was with us and we swapped them over before he left us. That way he had one to put in his coffin and the elephant he had beside him for those few hours we could take home. That elephant is in our bed every night.
Unfortunately, the night was very difficult for Emma. She had a real issue with placenta delivery after labour that lasted about six or seven hours, another long, tough challenge. When the bleeding subsided a little we rang some family, again it was very difficult telling them we had a baby boy named Riley. This should have been a much happier experience. Our first child. The first child on both sides of our families.
The three of us were moved to another room at about 9 am. I had to register Riley first thing so we could have his funeral the following morning and thankfully due to Covid restrictions this was now done over the phone.
Before I would have had to leave and go to the office in person. Riley was to be collected at 3:30pm by the Funeral Directors. We spent that time just holding Riley, hugging him and talking to him, crying with him. It was the most painful and special few hours of both our lives.
We started preparing to say goodbye about an hour before he had to go. We didn’t want to feel rushed. Handing him over to Sarah was a calmer moment than I had expected but now haunts me. I know it is an irrational and illogical thought but I still have a tremendous amount of guilt. Your number one job as a parent is to protect your baby.
I feel we were never given the chance to do that, and watching Sarah take him and leave us in the room alone is something I have thought about every single day since.
That was a strange night. A quiet night, trying to catch up on sleep, getting twenty or thirty minutes here and there.
Jess came in to see us. You could tell she really cared. The biggest difference between attending hospitals in Ireland and England was the way you were treated and the empathy shown. There are some excellent doctors, nurse and midwives in Ireland and with the exception of the fetal medicine team, sometimes you do not believe they really appreciate what you are going through and that in turn does not make you feel like you are getting the best care. In King’s, every single member of staff treated us with compassion, understanding and made us feel like they truly cared for us.
The following morning we got a taxi to the Crematorium. I had brought a shirt to wear but it was raining so I never took my coat off. I remember packing the shirt for the funeral before we left. So many little moments when the grief and anger nearly overwhelm you. I asked Emma was the shirt okay, I have no idea why.
We arrived at about 8:45 am. We had booked it for 9 am but when we got there we were told our slot wasn’t until 9:30 am. This was frustrating as we had friends and family back in Dublin all lighting candles at 9 am but we were quite defeated by now and arguing wouldn’t have changed anything.
Grief
The waiting room was also closed due to Covid so we had to go for a walk in the rain. When it was our turn we saw Riley’s little coffin for the first time. So tiny. White with a small plaque on it, Baby Riley Patrick Stevenson.
Three of Riley’s great grandparents were Patrick so the middle name for our first boy was picked a long time ago. I carried Riley’s coffin up the aisle and placed it on the altar. Two songs were played and Riley’s coffin was lowered. The whole service was probably less than ten minutes.
We went back to the hospital to get our bags and returned to pick up Riley’s ashes at 3 pm. They were in a small white box in a small white bag. We were able to book a flight for around eight o’clock but needed to get an Uber to the airport. £90, the bank actually blocked my card after that journey. Another difficult moment was going through security.
I had to explain to a gentleman three times that I had my son’s ashes with me and I didn’t want them to go on the conveyer belt. Since Riley was born I had never felt that far away from tears but some moments felt much closer than others. He was able to do a swab test and we went through.
When we got back to Dublin we had Covid tests done and straight back to our apartment. We had hoped some weight would be lifted when finally got back to our own home with Riley but no such luck.
Our hearts were broken, shattered, and all we faced was empty endless time. Cruelly the complications Emma faced immediately after labour was not finished. She ended up in the maternity hospital in Dublin twice over the next few days, including being rushed by ambulance just after midnight on Christmas Eve. The day didn’t matter for us, we were not celebrating this year but for Emma to be put through more pain when all we wanted was to grieve for our son felt so unjust.
We know our lives have forever changed now. We will never be the same people. We are a family but not in the way we should be. We will always hold Riley in our heart but never again in our arms. We have pictures and memories but we will never be able to add to them.
Unfortunately, our story is a far more common one than we realised. Every month brokenhearted parents have their lives turned upside down, many of whom must travel to the UK just like we did. For whatever reason, this isn’t spoken about here.
Most people I have spoken to still believed Ireland’s laws protected people in our situation, people at the lowest and most vulnerable, but they don’t. This needs to change, Ireland needs to support its people going through this.
The way we thought they did. For now, for us, it is just about dealing and working through our grief. About coming out the other side.
If life is a series of tests… what grade does this give us?
Richard Stevenson currently studying Sports Journalism lives with his wife Emma in South Dublin.
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