Caring For Special Babies & Children
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)

Henry James’ Story

Henry James’ Story

 

By Carol Waites

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This is a story I have tried to write a number of times and have never really been able to put the pen to paper (or the fingers to keyboard). It is the story of my son, Henry James Waites.
It’s a pretty long story and it doesn’t start on the 15th May 2019 when I found out I was pregnant, like you would expect. It actually starts back in 2010, when myself and my now husband Steve first decided we wanted to start trying for a family. I was 32 and Steve was 37 so I thought we had plenty of time to get things figured out. Funnily enough, for some reason I always thought I may struggle to have a child, and unfortunately I was right.
I could fill a lot of pages with the challenges that the next few years threw at us, but instead I’ll just summarise it briefly – a few cycles of clomid that were unsuccessful, one natural pregnancy that ended in miscarriage, one round of IUI, three operations (laparoscopies and hysteroscopies), multiple rounds of IVF both in Ireland and Greece, and 16 embyros transferred, of which we only managed to achieve one chemical pregnancy (early miscarriage).
Suffice to say it was mentally and physically draining, trying to juggle cycles with work, keeping things secret from all but our closest family and friends, and each failed attempt feeling like a miscarriage with all the associated heartache and loneliness. So after approximately eight years of trying to conceive we reached what we thought was the end of our road – we couldn’t face staying on the hamster wheel any longer so we made the very difficult decision to say that maybe parenthood wasn’t the path meant for us.  It was not easy to come to terms with at all, especially after so many years of it being our sole focus. I decided at that stage to throw myself into completing my masters – it was something I’d had in the back of my mind to do for a long time, so in September 2018 I signed up and started studying.
We were just living our lives normally when life decided to throw us another major curveball – I fell pregnant. Naturally. After all those years of trying and failing. I just couldn’t believe it, so much so I wasn’t even sure I was happy to start with! I was in total shock as I really thought there was zero chance after everything we’d been through. However, once we managed to get our heads around it, we were so excited – but of course I knew falling pregnant was only the first hurdle, so I was afraid to allow myself get too happy. We booked an early appointment with our consultant given our history and on 29th May 2019 we had our pregnancy confirmed and we heard our special little guy’s heartbeat for the first time. Given our ages and history, our consultant suggested we do NIPT testing (non-invasive prenatal testing), which is just a simple blood test to check for any anomalies. We agreed to this, and on the 18th June I came in for my third scan and the blood test. I remember vividly as I sat filling out the form looking at the names of the different things they would test for and not really taking them in as the only one I’d heard of was Down Syndrome. I texted Steve a picture of the form saying, “This looks scary” and he responded with, “We couldn’t be that unlucky”. I laughed at the time, but it turns out we bloody well are that unlucky.
A couple of weeks later, while Steve was on a business trip in Bulgaria, I got a missed call and a text from the consultant to ring her. I was on my lunch in work at the time, so ducked into a conference room to return her call and that’s when my world came crashing down. She advised that my test result came back as high risk for Trisomy 13 or Patau Syndrome – a one in two chance. My head was reeling but I didn’t know what it was so wasn’t sure how to react – it was only when she said to me that I wouldn’t really be familiar with it, as unfortunately the babies who are diagnosed with Patau tend to be either stillborn or pass away shortly after birth that the seriousness hit me like a ton of bricks.
Everything was a bit of blur after this. I remember ringing Steve and not getting hold of him but texting him he needed to call me back urgently, Googling Trisomy 13 and Patau Syndrome and nearly getting sick with the fright of the results. It was still lunchtime in work, but saying nothing to anyone, I just logged off and went home, tears streaming down my face. I was lucky my sister worked in the same company and came with me to look after me, especially with Steve still a plane ride home. More frantic Googling once I got home, realising that it was very likely that our unexpected happy ending seemed like it was not going to be. Steve got home later that evening and I honestly can’t remember the rest of the weekend – I am sure there was lots of tears and lots of hiding under my duvet.
The following Monday, 1st July, we went into the Rotunda to have a CVS test to try and confirm the diagnosis. They couldn’t see anything on the scan to indicate Patau at this stage, so I allowed myself a glimmer of hope hearing his beautiful little heartbeat. It just seemed unfathomable that our little baby in there with his heart beating away so strongly could be so sick. Then the waiting game began. On the Friday, the initial test came back confirming the diagnosis, but we were told we had to wait two weeks for the result to be confirmed. Unfortunately, due to a slow growing sample, two weeks dragged into four weeks, which was really challenging. We had plans to go to Malta to see my mum, which we cancelled and instead decided to go down to Liss Ard Estate in Cork for a little break. We had expected the results the Friday we were there and had hoped being away might give us time to process it all – we knew it was very unlikely we would hear good news, but we still held out that tiny bit of hope. But unfortunately, the news didn’t come that weekend, and it was only on the 29th July that we got the call from the Rotunda while we were in the car on the way for our appointment to confirm. I decided on Henry’s name the night before while lying staring at the ceiling. For some silly reason, I thought giving him a name may change the outcome – my dad was John Henry, and Steve’s dad is James, so our little guy was to be called Henry James.
So now we knew for sure, what were we going to do? Thankfully, due to the fact that the laws had changed in Ireland only recently, we had options. I’ve always been firmly pro-choice and in fact marched in Dublin city to repeal the 8th amendment, but never in a million years did I envisage I would be the one making that choice. The hospital reassured us that we didn’t have to rush our decision, so we went and spoke to a specialised counsellor to try and help us decide what we were going to do. Let me tell you, it was the hardest decision I’ve ever had to make. I guess when thinking of being in this position, I didn’t think I would be able to carry on – I mean it seems totally unfathomable, right? But then again, saying goodbye to this little guy who we had wanted for so many years seemed just as unfathomable to me. To my mind it was which awful option do you want to choose? Lose your much loved and wanted baby now, or lose your much loved and wanted baby later? In the end, we decided that as long as Henry James wanted to stick with us, we would try our very best to enjoy our precious time with him.
We spent the next few weeks in a bit of a bubble really. I both loved being pregnant and was terrified of it at the same time. I was terrified about what I would say if someone asked me when I was due, I was terrified of crying in public; the emotions were just so close to the surface I really couldn’t trust myself to be able to hold onto them. I was trying to sort out life admin like speaking to work and arranging a leave of absence from college and I definitely did make a show of myself trying to do them. The words would stick in my throat and the tears would just flow as I tried to explain what was going on. I still remember the surreal feeling of saying the words out loud. It felt like it suddenly made everything real. But I loved feeling my bump growing and the feeling of HJ wriggling around inside me. I had cravings for milkshakes and potatoes. I normally hate McDonalds, but had plenty of trips to treat myself to one of their milkshakes! I’m a pescatarian so I don’t eat meat, but do still eat fish – typically HJ decided he wasn’t really into the pescatarian lifestyle and the smell of salmon especially made me want to puke! A friend of Steve’s offered us his apartment in Gran Canaria, so in September we went away for a week just the three of us – our first and only family holiday. It was lovely to just pretend everything was normal for a while and not deal with reality to be honest!
While we were away, we discussed how we would approach things going forward and decided that the only way we could really get through it was to be open and share our story. On the 18th September, we announced our special little guy to the world on Facebook, explaining that it was a bittersweet introduction as unfortunately we would only have him with us for a short time. It wasn’t the easiest thing to do, but it was definitely the right thing – why should Henry not get the same acknowledgement and love as any other baby? We were bombarded with love and good wishes from our friends and family. It felt like being wrapped in a big virtual hug.
We were so lucky with the incredible team we had around us in the Rotunda. They have specialised midwives to deal with both bereavement and also helping people through situations like ours. I both loved and feared our appointments after the diagnosis – I was always excited to get to see Henry James, hear his little heartbeat and get my treasured scan pictures. The midwives started slowly helping us prepare for what was to come. They gave us one of the memory boxes from the wonderful charity Féileacáin to take home with us, spoke to us about memory making and whether we would like to have someone from the charity Now I Lay Me Down to Sleep (NILMDTS) to come and take pictures after he was born, whether we wanted to take him home before his funeral, palliative care for him if he survived after birth and how we might deal with funeral arrangements. I vividly remember the discussions about the photographer. I probably looked at Jane our midwife like she had 10 heads – my mind couldn’t really wrap around the idea of taking pictures of what was very likely to be my dead baby. I went home and looked at their website and was just blown away by how beautiful and precious those pictures looked and realised my initial reaction was so far off the mark – what an amazing gift to be provided with. Those pictures are now my most treasured memories.
On the 12th November, myself and Steve went into town to a lovely restaurant for dinner for my birthday. I had felt Henry move throughout the day, but thinking back his movements probably weren’t as noticeable as usual. I went to bed that night and felt him do a big wriggle, which I think now was him saying goodbye. We had an appointment in the Rotunda the following morning. I wasn’t thinking too much of it, but I remember looking at the screen up on the wall and then at Steve’s face as he realised before I did that there was no heartbeat. Then our consultant said the dreaded words, “I’m so sorry, he’s gone.” Even though I had known this was likely, I had really wanted so much to make it to his due date on the 18th January with him. I felt numb, angry, and cheated. We had so little time with him and now even those last precious few months were gone. We were sent home and told to come back in on the Friday and they would induce me.
The next few days are a bit of blur. Steve’s mum and dad were due to visit us from the UK anyway that week and my mum got a flight back from Malta. We were given the name of a lovely Humanist celebrant who came to visit us and helped us make arrangements and talk through the funeral. He was a bereaved dad himself and it made it so much easier talking to someone who really understood what we were going through.
I remember going to the hospital as if it was an out of body experience, walking past happy families in the corridor taking their babies home and trying not to just burst into tears at the sight of them. They gave me the tablets to induce labour and we were made comfortable in our room in the labour ward. I had monitors put on to monitor my blood pressure, but the monitor across my tummy monitoring Henry’s heartbeat was undeniably absent. Usual poking and prodding ensued over the next day, as I didn’t seem to be responding to the tablets unfortunately. Friday turned into Saturday, with still no sign of anything happening. We had a TV in the room and on the Saturday evening Notting Hill was on and we watched it. It wasn’t my first time seeing it, but I had no recollection that the author Henry James was referred to in it. I remember looking at the screen in disbelief – I hope it was a sign from our Henry James that it was all going to be ok!
We both went off to sleep after they tried me with one more tablet to induce labour and I woke with a big shock around midnight as my waters eventually broke. The next few hours went pretty quickly. I had an epidural so didn’t feel much pain and with two small pushes at 2.25am on the Sunday morning, our little man arrived weighing just 2lb 2oz.
I’ve struggled with whether or not to write this next piece, but I think it’s important to be honest. There is no denying I was delighted to meet him at last, but I definitely wasn’t prepared for the reality of what came. I’m guessing as he was early (31 weeks) and had passed a few days, when Henry was born he was extremely delicate and it made it very difficult to touch him. He was really red and his skin had tears, which were exacerbated with movement. I was afraid to move him, afraid to dress him and was so annoyed at myself for being afraid. I’d envisaged cuddling and touching and kissing him from top to toe, but I couldn’t. Again, I felt cheated. The midwife who delivered him helped us dress him in his first little outfit, but it wasn’t long until I could see stains seeping through and it really upset me. I hadn’t been warned about any of these practicalities that might be encountered and it really was difficult to deal with.
A little while later we were moved to a quiet room away from the labour ward where we could spend time together. Surprisingly, we did manage to get some sleep with Henry beside us in his cot surrounded by all his teddy bears. The following morning, our parents, my nanny and some close friends came to visit – I must have been high on all the post delivery hormones as I remember chatting and laughing with people as if everything that was going on in that room was totally normal, when let’s face it, it was anything but! He was brought loads more teddy bears and it wasn’t long until he was fighting for space in his cot, surrounded by nothing but love. That evening, the wonderful Michelle from NILMDTS arrived like a breath of fresh air into the room and we got to take our family photos. She marvelled at his 11 little fingers and 11 little toes and made sure to take some special photos of them for us.
But it broke my heart that his family and friends didn’t have the opportunity to hold him. I knew moving him would be too much, as a few times when we’d moved him, his nose started to bleed and I really just couldn’t cope with it. He’d been through so much, I couldn’t bear to think of hurting his little body anymore. It wasn’t until one of the lovely bereavement midwives visited the following day that she suggested we could have the morticians help by wrapping him up to protect him and make it easier to handle him without what in my mind was “hurting” him. Once he was wrapped up, it meant we could hold him without worrying about damaging his delicate skin, and put him in his final outfit we had picked out for him.
We originally hadn’t envisaged taking Henry home with us before his funeral, but when his funeral was arranged for Wednesday and we were due to leave the hospital on the Monday evening, I found it impossible to think of leaving him. After some quick calls to the charity Féileacáin, a cuddle (cooling) cot was arranged to be dropped to our house and set up by a lovely volunteer. We had two precious nights at home with him, with family here with us and he got to meet his special furry big brother, Bailey. On the Wednesday, we made our way to his funeral in Mount Jerome, Henry sitting on my lap in the back of the car. Steve said he wanted to take the route through the Phoenix Park to see if we could see the deer that we saw on our walks in the park with Henry and Bailey. At the time I thought I was humouring him as I’ve only ever really encountered the deer while walking, and away from the main road. Sure enough though, the entire herd of deer stopped the car and walked across the road in front of us. I honestly couldn’t believe it, another precious sign from our brave little man.
We had chosen readings and songs while still in the hospital, which was definitely one of the toughest parts of the process; it felt so important that everything would be perfect for him. We couldn’t handle hearing the words of “Tears in Heaven”, but loved the song and the sentiment, so we chose an instrumental version for our first song as people came in, “How Long Will I Love You?” by Ellie Goulding during the ceremony, and “Follow the Sun” by Xavier Rudd to finish. Steve’s mum and my sister both did readings for us and I’m eternally grateful to them for it. I had thought at one stage I’d be able to say some words myself, but when the day came it was all I could do not to melt into a puddle on the floor. Myself and Steve held hands for the whole thing and I told him to just keep pinching me to try keep me sane. One of the readings we had was “Look for me in rainbows”, so we always make sure to give him a little wave every time we see one. We had arranged white roses for everyone else and kept two red roses from his Mammy and Daddy; as everyone left they put the roses on his coffin and myself and Steve spent a few minutes alone with him saying our final goodbyes.
Of course, Henry’s story doesn’t end there, he is with us in every way in every day. A couple of weeks later we booked a few nights away in a hotel to try and relax. We booked massages and Steve’s was first so I was sitting on the bed in my robe when I heard a fluttering against the window. I went to take a look, only to find a butterfly sitting in the windowsill. It was the end of November, we were in an old manor house hotel and with all the windows shut; I actually remember laughing and thinking, “OK HJ, nice to see you!” I couldn’t even get the window where it was open, so had to go open the other window in the room and let him out.
A few months later, I noticed that the blue orchid that Mum got me when she arrived back in Ireland just before Henry arrived had just started changing colour from blue to white. I didn’t think orchids even changed colour, so I Googled it and it threw up the meanings for both; “The white orchid stands for innocence, beauty and elegance.” “Orchids are available in every colour of the rainbow, excluding true blue. There is, however, a blue toned orchid – they are extremely rare, so they represent rarity, as well as spirituality and meditation”. I just smiled and thought, “Well that’s certainly my boy!”
When I look back, I honestly can’t believe what we’ve been through and that we’re still standing. I’m so thankful we got to have Henry, but I’m not one of those people who says they wouldn’t change a thing. I’d change everything. He’d be happy and healthy and in my arms, or probably running around wrecking my house now if I had my way. But unfortunately, they weren’t the cards we were dealt. I saw a quote the other day which really resonated with me though: “I’m not saying it’s going to be easy, I’m saying it’s going to be worth it”. You were worth every sleepless night and every tear little man – Mammy and Daddy love to you to the moon and back.