Dear John

I’m standing in the hospital cafeteria and everyone around me is moving by in a blur. Time is moving slower and no-one has noticed that my whole world has just come crashing down around me. The cashier asks me a question, and I hear sound come from my mouth in response, but I don’t know what I’ve just said.

Two hours earlier, my husband and I were being called into our 20 week Morphology scan. It was so routine and our sonographer was happily showing us how big our baby had gotten since our 12 week scan. We could see his hands and toes so clearly and our little man even took the time to confirm his Y-chromosome. It should’ve been over-joyous, but soon the sonographer went quiet and serious, continuously revisiting what I concluded to be his chest. He explained that he was just having difficulty getting a clear picture because of my placenta placement. After almost forty-five minutes of discomfort from a full bladder, he told me to go to the bathroom.

When I returned, the sonographer was nowhere to be seen and was absent from the room for quite a while. When he returned, he asked when we were next scheduled to see our doctor, before disappearing again. My heart sank. I turned to my husband and simply said “This isn’t good.”

The sonographer returned after a few more minutes and his entire demeanor had shifted. Being the direct person I am, I asked immediately if everything was okay.

The sonographer shifted uncomfortably and then sighed. He said he didn’t want to continue with the ultrasound, knowing he suspected something to be wrong without explaining it to us.

I had maybe one more minute before the worst month of my life began.

I lay back down on the hard table and he placed the machine back on my stomach. He zoomed in on our son’s chest again and pointed out his heart. He explained that the right side of his heart was working well, but then pointed to the left side, which was so tiny in comparison. He just said “something is not right.”

A few minutes after that, a doctor entered the room and explained that what they were seeing was consistent with a condition known as ‘Hypoplastic Left Heart Syndrome’, which meant nothing to either of us at the time.

For most people, this would’ve triggered a haze, but I had never felt more sharp. I absorbed every single word they said.

We were advised to go immediately back to the hospital to speak with an obstetrician, and to be advised on what would happen next.

And I knew.

We left the radiology building and I let myself cry for a minute. The words that escaped my mouth were “I knew this was going to happen and no-one believed me.”

My husband just hugged me and said “I am so sorry.”

From the beginning of the pregnancy, I’d had this overwhelming feeling that we weren’t going to keep this baby. It seemed so illogical and everyone told me it was “normal” to feel unsure in the first trimester. We tried to lay my apprehension to rest by getting the Harmony test at ten weeks – it checks for major chromosomal abnormalities. This came back all clear and everything looked to be on track at our 12 week scan. But entering the second trimester, with every assurance that we were deemed “low risk,” the intensity of my fears increased. I was waking up a least two or three times every a night, heart racing, often sweating and knowing something was wrong. But there was no evidence to support my anxiety. I’d had no reason to feel this doubt.

But on a soul level, it couldn’t be suppressed by conscious thought, I knew.

It’s a very lonely, terrifying experience to having such a deep sense of knowing, without any logical explanation as to why. It is something that only someone who has been through this can ever truly understand.

The hospital triaged us and told us to get something to eat before seeing a doctor. And there we were, standing in a room full of strangers, moving like blurs about their lives, while mine felt like it had just stopped.

The hospital we were at was ill-equipped to deal with cardiology issues like ours and recommended we be referred to a tertiary hospital as quickly as possible.

It took two weeks before we could be seen by their specialists. And it was the longest two weeks of our lives.

The day we came home from our 20 week scan, we were just in shock.

Working in health, we were both educated enough in cardiac anatomy to know that the left side of the heart is important for oxygenated blood flow to the lungs, and acts as a pump. Common sense told us that human beings are designed with a motor like any other machine and that if the motor doesn’t work, neither does the machine.

Daniel, my husband, took it harder than I did initially. Some soul-level connection had seen me begin grieving this long before it was ever confirmed, but for him it had only just begun. His initial reaction was trying to find an answer, a reason. In most cases, there just isn’t one.

For me, I had started grieving long before the diagnosis. In some ways, I felt like the entire pregnancy was a grieving process.

The second day was harder. I went back to work, because I didn’t want to be alone. But I let myself completely feel it. I sat in the shower and I sobbed so hard, I thought I would never stop. I wondered how much our baby knew about what was happening to him.

When Daniel came home, I pulled myself together for him and he asked me “You know what’s going to happen don’t you? You’ve known this whole time.”

To which I replied “I don’t think he’s ours to keep.”

The grief began to hit me like waves assaulting rocks on the shore. One day, I started hyperventilating. I couldn’t breathe and I felt like I was drowning under the weight of it.

We looked for hope in other peoples stories, but the research we did for this condition indicated that there may be very little to hold onto. Children who survive the birth would need open heart surgery within days, if not hours, after they were born. So instead of being able to hold and feed my baby, he would be taken away to be cut open and there was a good chance he would not survive the initial surgery. The thought of carrying him and nurturing him for 9 months, only to put him through that crushed me and that was just the beginning.

He would most likely spend the first six months of his life in a hospital, with feeding tubes, because he probably couldn’t swallow on his own. And then, if he managed to survive that long, he would be forced to endure a second procedure that once again involved opening his chest and performing a corrective procedure on his heart. It would be a long 12 months of “what-ifs” and his life literally hanging in the balance.

There was one more open heart procedure in the process of palliative correction, which he would then need to under-go by 3 or 4 years of age – at a time where he would ask questions and we would have to tell him what was going to happen to him – again.

By this stage of the pregnancy, I was able to feel him kicking and moving around. It was now very bittersweet, a constant reminder of the weight of the road that lay ahead. One evening, our little man was particularly active and I called for Daniel to come quickly to feel it. He looked at me and hesitated. I knew what he was thinking, how hard knowing there was a life in there that may never be. When he placed his hand on my stomach and felt the little twitch, a sound I have never heard escaped him. It was such sorrow, it hit me in my bones. Another moment that should’ve been filled with joy was taken from us.

I spent the next two weeks hoping, praying, that the sonographer got it wrong. That it wasn’t that bad. It was all I had left to cling to.

The day we walked into the tertiary hospital, we were taken straight into the examination room for our fetal echo-cardiogram. The new sonographer was very honest and explained that he would tell us exactly what he saw and no questions were off the table. He said at some point during the appointment, a paediatric cardiologist would be joining us to help explain the official diagnosis.

Once again, we were filled with excitement at seeing our little man, but this time it created a heaviness within me. My parents joined us. To see the joy on their faces at seeing their grandchild on the screen for the first time was almost too much to bare.

I began to panic and feel dizzy. I blamed it on being in a back-lying position, but it was another heavy wave of emotion crashing onto me.

The fetal cardiologist confirmed that it was, in fact, the diagnosis of Hypoplastic Left Heart Syndrome with additional mitral valve dysfunction, aortic atresia, retrograde blood flow and a small left ventricle. He drew us diagrams to help us understand that this was extremely complicated and that palliative correction may not work.

If it did succeed, he would be facing old age disease early in life. The oldest living patients who have under-gone this procedure are only in their early thirties and many are on heart transplant lists. The life saving process was palliative, not corrective. Like putting a band-aid on a broken leg. He would be facing a life of uncertainty, pain, hospitals and suffering from secondary problems like cirrhosis of the liver, leaking protein from the gut, edema in the extremities due to poor circulation as he grew, reduced physical ability and eventually heart degeneration and transplant. All before the age of 30.

If we decided to go through with this, he would suffer, there was no doubt about it.

We were given all of our options. The others were to go to term with him and just offer compassionate care – meaning he would be made comfortable, but given no medical intervention and he would pass away within days of being born. We both knew we couldn’t live with that if we went that far.

They also offered us the option to have an early delivery, where he would not have to suffer at all. In technical terms, its a ‘late termination,’ but I cannot bring myself to call it that, because to terminate implies that he would be unwanted, which couldn’t be further from the truth.

They gave us the weekend to mull it over, but our decision was made by the time we got to the car-park.

It’s a funny thing, grieving for someone who is still there.

Going back to the hospital on Monday was not easy. We had everything explained to us again and then the form of consent came to be signed. My hand shook as I sealed my son’s fate. My parents were with us every step of the way and that moment nearly broke them too. They left Daniel and I for privacy, but I knew it was because they couldn’t let us see them break under the weight of decision that we would have to bare.

To clarify, this was the hardest decision I have ever been forced to make in my life. No-one deserves to endure what came next.

After the forms were signed, they took us to a little private room, where they give you grief counselling before bringing you the pill that begins the induction process.

When they put that pill in my hand, I just stared at it. I knew what it meant and there was no turning back from it once i’d swallowed it. I just stared at it. I was just so scared in that moment. It was all I could do.

Then, with every ounce of courage I had in my body, I put it in my mouth and swallowed it. And that was it. Daniel and I held each other and cried and cried for the longest time. And I felt our baby moving and nothing could have stopped the pain in that moment.

Then everything went numb. I felt nothing and I could think of nothing.

We were told to return on Wednesday to continue the induction process and begin the labour.

I kept telling myself to handle “one trauma at a time.” I was meant to have four more months to prepare myself for the labour and birth. I was ashamed to admit that I was more afraid than i’d ever been in my life.

The medicine they give you to bring on labour is intense and with each dose, I was having a bad reaction which consisted of vomiting and diarrhoea. By the final dose, after 14 hours of labour and no sign of a birth in sight, the midwife suggested that I needed a break and that a part of me was fighting the process, because I didn’t really want this. She was probably right.

After a three hour ‘reprieve,’ they resumed dosing me, but were now giving me anti-nausea and gastro-stop medications to help with the side effects. After a short sleep, I found myself in a more accepting space and the message “It’ll happen when it’s ready” kept coming to me.

I found a primal part of myself. Time stopped mattering and it was just me and the pain. The doctors told me that I didn’t have to be brave and get through this completely lucid. So I submitted, and allowed them to offer me some pain relief. A part of me felt like I deserved to feel the pain. The nitric oxide gas, supplied through a whistle, was what helped me focus. My brain would go into a kind of trance – not sleep, but not conscious either – between contractions. Then when I had a contraction, I began counting them out and inhaling as deeply as I could. I really don’t know how long I did this for, because there was nothing else.

Daniel was with me for every intimate detail of the journey. He said the most difficult part was and is, standing by and feeling helpless.

When our son, John Ryder, finally appeared, after 27 hours of intense labour, I cried while I was giving birth to him. Because I knew this was the end. He was gone and I was never going to be the same. He was born at 3:18pm on July 4th, a day we will forever spend in remembrance with America. John didn’t get to open his eyes, take a breath or feel the warmth of my skin. He was gone.

Daniel got to cut the cord and the hospital was unbelievably supportive. They dressed him and let us hold him and be with him.

But when I saw him, a part of me thought “this isn’t my son, my son is alive.” Because to me and only me, he was. We had a bond that no-one else had or ever would have the chance to create. It was hard to see him looking so perfect, like a little doll sleeping and knowing that he was really so sick. He had long legs and big feet like his dad and the nurses mused over how big he was for his gestational age.

To touch him was very hard for me, because he was cold and all I wanted to do was warm him up.

Daniel took him into his arms and refused to let him go. It was gut wrenching, knowing what we should of had in that moment and what we actually experienced. I knew Daniel would’ve been the greatest dad and a part of me could never share the life I had felt from the inside, with him. Daniel never got to meet his son and I couldn’t give him more than a sleeping baby that would never wake up.

The hospital has special cribs that allow couples like us to keep their stillborn with them overnight. I felt uncomfortable with the idea, but also couldn’t bare to send him away.

The next morning, Daniel took him straight back into his arms and wouldn’t eat or put him down. We knew our time with him was coming to end and saying goodbye forever was next on the list of traumas.

No-one can ever prepare you for it.

I was torn in two. The logical part of me said it wasn’t healthy to stay and prolong the agony of leaving him, but the instinctual part of me wanted to hold on and never leave him unprotected.

Needless to say, leaving the hospital room without him was the hardest thing I’ve ever had to do. I don’t think I stopped crying for the rest of the day.

Coming home with nothing but shattered pieces of my heart and life without my John, was indescribably sad. The word sad doesn’t begin to convey the feelings we had, but no words ever will.

In the days following, I found it difficult to come to terms with simply not being pregnant anymore. My body deflated like a balloon and looked as though I had never been pregnant at all. They give you medicine at the hospital to stop your milk coming through, so when I looked at myself I felt sadness just knowing he wasn’t there. Everything I had done for the last six months had been for him and now my reason was gone.

The support we received was unbelievable and we were surprised by how many people reached out to us. That was definitely a big part of what helped us through some of those dark days.

Because of the unrelenting trauma, my coping strategy was to compartmentalise each step. The only way I could get past each revelation was to put the next step into a little box, and not allow myself to be overwhelmed by the next or last thing. I would not have been able to survive any of the decisions we had to make, if I had been overly emotional.

But I am also not someone who will shy away from the the edge of my fears and in one of the darkest nights, I recognised the one greatest pain I had blocked off. I killed my baby.

And it threw me into hysterics. I was inconsolable. Daniel was there and telling me that the reality was not so, but somewhere in the depths of my soul, I know I will never fully be able to forgive myself. Truthfully, this would be the case no matter what decision i’d made. In making the decision, I chose to bare the pain and suffering so that my son would never have to. To be too afraid to let him go would have meant that my selfishness would have resulted in his suffering. By taking that away, I became a mother.

We decided to have a funeral. For Daniel and I, we had said our goodbyes at the hospital. But a funeral was a chance for everyone who was invested in this pregnancy to have a chance to say goodbye. John was wanted and the world lost a little bit of light the day he left. It’s difficult walking into a room full of people, everyone knowing that you were the couple that was unlucky enough to have this happen to them. The complete despair and pity in their eyes breaks you down all over again.

No-one wants to imagine this happening to them.

We never believed it could happen to us. We are fit, healthy and had no risk factors. You see, the universe doesn’t care who you are. It doesn’t concern itself with what’s fair. We aren’t religious people, but I am a person who is spiritual and a part of the light at the end of this for me is believing that our John came to us for a reason.

Some people don’t stay in our lives for a long time, but the lessons they teach can last a lifetime. 

John managed to touch so many lives and he never even drew a breath.

That is why I need to share his story. This is our story, but sadly, pregnancy loss is something we share in common with so many other people. It doesn’t matter if you’re 10 weeks or full term, losing the potential of a life is the most devastating thing that people can go through. Sometimes, nature decides for us in the form of a miscarriage and sometimes it can be more cruel and take it from us once we feel them, or even meet them. But no-one should ever feel like they don’t have the right to share their story or celebrate the short journey they had with their child.

Johns journey was full of love and he taught me that it’s okay to want things for myself. He showed me that all my fears about having children were unnecessary. I was strong enough to let him go, so I would definitely be strong enough to offer any child the biggest part of my heart.

Please don’t be scared to talk to a friend or someone you know who is going through the loss of a pregnancy. You cannot say anything to make it better, but you cannot say the wrong thing either. Stand in the presence of a grieving parent and be awkward. Listen, ask questions. Confront their grief with them. You can’t catch it, its not a disease. Hug your own loved ones a little tighter, and be grateful for the little daily irritations. Because you have them with you.