Dying at birth

Stephanie and David Sciberras are both in their late 30s and have been married for nine years. Last year, when their first daughter was three years old, Stephanie found out she was pregnant with their second, this time a boy. This is her moving story of life and loss…

“We had always planned to have more than one child as we both come from relatively big families and always wanted our daughter Mathea to have at least one sibling to share her future with. We had been putting it off for a while because of my job, but I was ecstatic to find out that I was pregnant again, and immediately started looking forward to a career break.

As opposed to my first pregnancy, this one was not easy. I experienced practically all the symptoms one usually reads about.

Our daughter was the first to receive the news. We told her she would be getting a sibling just after our first scan. Even though she couldn’t possibly have understood the full meaning of what we were telling her, she was excited and happy. Throughout the pregnancy, she was supportive, constantly taking pictures of my growing belly, and giving me tight hugs. She loved to talk to the baby about all the fun they would have when he arrived. As young as she was, she insisted on contributing to the daily house chores, like clearing up her toys and getting things from upstairs when I asked her to. I could see she was making it a point to be extra helpful and cooperative, and whereas I feared the pregnancy would take a toll on our relationship, it actually helped us bond even more.

The baby used to kick a lot in my tummy, so we started preparing ourselves for sleepless nights and a lot of mischief. I went into labour two weeks before my due date, and on April 1, Ben was born, weighing 2.9kg. Even though

I knew what to expect, this time, the labour was much tougher and a lot more tiring, but as with every mother, all the pain and fatigue disappeared once I heard his first cry and held him in my arms.

Ben was checked several times while in hospital and I was reassured he was perfectly healthy. The staff was kind and supportive and I felt peaceful and relaxed. I was thankful to God for another wonderful experience and the lovely child we were entrusted to care for.

Contrary to what we were preparing ourselves for, Ben was an exceptionally good baby. He started to breastfeed immediately, and was sleeping for four-hour stretches, only crying during nappy changes.

I was eager to see Mathea’s reaction upon her first meeting with her baby brother and it was awesome to see her lost in a world of her own, while looking at him and observing his minute body with attention to detail. She was mesmerised by his tiny fingers and toes, and waited patiently until he opened his eyes.

I left the hospital on Easter Saturday, while Mathea was still on holiday. She planned to make the most of her time with Ben – nothing and no one could keep her away from her brother. She had to learn how to control her voice and to speak softly not to startle him, and she also helped to change nappies.

We made sure she felt involved in the whole process and assigned her specific roles like opening the cards that had already started trickling in through the letter box. She also took it upon herself to update the family on how the baby was doing. Her cooperation helped us to settle in quickly, and it was a relief to see she was feeling as important as when she was still our only child.

I felt so happy I almost looked forward to having to wake up at night to tend to Ben. Each time I held him in my arms, I felt peaceful love and nothing could stress, or upset me. I was looking forward to Ben’s first full weekend to spend more time together with our extended families. I thought of going out for a drive, or if the weather permitted, a walk, but this was not meant to be. On Saturday morning, Ben’s 10th day of life, he was sleeping next to me in bed when he started to moan. I realised he was unhappy, but he was not crying loudly, nor was he kicking his hands and feet as babies do. His cry was a long, low sound that expressed pain. He was complaining about something, but I could not identify what it was. I made sure he had a clean nappy and was not hungry, and I held him in my arms for some time, but it was all in vain.

When my husband woke up, he too realised that Ben was irritable. We decided to allow some more time, but at around 10 a.m., we went to our paediatrician. The drive must have relieved Ben as he slept in the car and we entered the clinic in embarrassment, thinking we might have overreacted. The paediatrician checked him thoroughly, and though Ben had started to cry loudly once we undressed him, the doctor could not find anything wrong with him. His only concern was that he had not fed since 6 a.m., so we agreed to call the doctor again should Ben still not want to drink by the early afternoon.

While we were out and about we stopped on an errand, and then went back home to prepare lunch. Ben kept moaning every now and again and we also noticed he was not as active as he was in the previous days. I started to get even more worried as something told me he was seriously uncomfortable and that I should investigate further. I was starting to feel confused and I soon crept into panic mode. We called the paediatrician once again and he told us to take Ben to hospital. I checked his temperature, and because it was lower than 36°C, I felt somewhat relieved. Little did I know that an infection in newborns can also manifest itself in low temperatures. We left Mathea with her grandparents, and explained that baby Ben was not feeling well and that we had to take him to hospital.

In the emergency room, Ben was once again undressed to be checked, so once more he was crying fiercely, and covering up his moan. Again, we were told that except for the fact that he was not feeding, there was nothing obviously wrong with him. They recommended we stick around to have him observed and hooked up to a hydrating drip and a feeding pipe.

Once inside the ward, two doctors checked him again. This time, they advised that blood samples were necessary to help with the diagnosis.

A sample of his spinal fluid was also taken, and though I did not like the procedure, the doctors reassured me that they were going to leave no stone unturned to find out what Ben had. By this time, I had pretty much realised that he had something serious and was already crying my eyes out.

We were told it would take a few days for all the test results to come out, so I wrote a list of things we needed for the hospital stay and David went home to fetch them. The nurses put Ben on a hydrating drip, gave him to me to hold, and kept coming in and out of the room to check on him. Each time, they reassured me that as soon as the first results came through, they would be in a position to administer the appropriate medicine.

But I could see that Ben was getting paler and paler. At one point, he started twisting his back and stretching his neck to one side. I held him in my arms all the time, by now feeling desperately lonely and helpless. I was now sure something was terribly wrong, I wanted to be alone with him, and by the time David returned with the stuff, Ben’s condition had deteriorated rapidly.

He was still moaning and we asked the nurses for something to calm him down so he could at least have a good night’s sleep. Unfortunately, however, he couldn’t even swallow painkiller syrup.

We asked for permission for David to stay with us, and soon after, we were relieved to see Ben fall sleep in his arms. He looked so peaceful and angelic that, once again, we felt hopeful that by the morning we would have an indication of what had caused him so much pain.

At around 11 p.m., the doctor came to tell us Ben would soon be taken for a chest X-ray. She then held out her stethoscope and put it on Ben’s chest. Suddenly, her face went whiter than a bed sheet, and with as much control as she could muster, she asked us how long he had been asleep for. The truth was that Ben’s heart was not beating, and although we thought he may have been asleep for half an hour, he was still rushed for CPR.

We cried and prayed that Ben would be well, but at the same time, we knew 30 minutes without a heartbeat were just too long for anyone to survive. I was sobbing my eyes out when I heard the medical team approaching. An excruciating pain infiltrated my heart as the doctor said that Ben had not made it and that he had passed away in the comfort of his daddy’s arms.

The staff was in utter shock. They had tears in their eyes while they tried their best to console us. They kept telling us we were responsible parents because we had acted on parental instinct and had brought him to hospital as soon as we realised that something was really wrong. They insisted we should not feel guilty about anything at all and that what had just happened was definitely beyond anyone’s control.

The doctor explained that, given the circumstances, a postmortem had to be performed and that we had to wait until Monday for the results. By Monday morning, the results of the blood tests also started to come in. They indicated that Ben had contracted meningitis, but further investigations and results were required to confirm the diagnosis.

Both the postmortem results and the blood tests arrived to the same conclusion – Ben had contracted a rare strain of bacterial meningitis, called Citrobacter koseri, which invades the circulatory systems of newborns in an aggressive manner, leaving them with only a five-per-cent chance of survival. The postmortem confirmed that, other than the bacterial meningitis, Ben was a healthy baby. No one can tell how he contracted the disease. All we know is that it is a rare condition both locally and in the UK.

Following the conclusion of the diagnosis, the doctor told us that had Ben survived, the chances were that he would have been left severely brain damaged and that he would have lived a low-quality life. Once again, this was a confirmation that all our hopes, dreams and plans for Ben were never meant to be. In hindsight, I thank God he took him, rather than leaving him with us in such a state. We know he is in a much better place now and that, ironically, he is now taking care of us, rather than us taking care of him.

I now know there is absolutely no worse experience than holding the lifeless body of your own child. At first, I was hit by a strong sense of denial, which was closely followed by an abyss of desperation. Why do these things happen? Ben was healthy, we were happy – all was proceeding well. Why? The next thing to cross my mind was what to tell our daughter. How would she react? How do we explain all this to her? And then, more thoughts, more confusion, more pain, shock, disbelief and a sense of helplessness invaded my soul, body and mind. I was sobbing for hours, thinking, going over the whole day, wondering, worrying about our parents, how was I going to cope?

Will I cope at all?

The news came as a shock to everyone, but in a way, David had bonded less with the baby. This is understandable since he was not the one who had carried him for nine whole months, and although always actively present, he was not the one who had given birth. He empathises of course, and he makes it a point to return from work at 5 p.m., but I don’t think he still suffers as much as

I do. Our parents were also devastated. Ben had brought so much joy that had been cut short unexpectedly and unreasonably.

Before the funeral, I was too shocked and disoriented to grasp the full extent the blow had had on the rest of the family. David’s mother is somewhat stronger than my own, probably because, being a widow, she has already been through the loss of a dear person. My mother kept her thoughts to herself, and to this day, is incapable of talking about Ben without crying. We found a lot of support from our family and friends, especially since I could not bear staying at home alone during the first few days.

Our biggest concern was, of course, Mathea. We had to figure out the best way to break the news to her. She was still at her grandmother and we had agreed to pick her up the following morning. We knew she’d be eagerly awaiting her dear brother. I trembled at the idea of having to tell her the truth so, initially, we told her Ben had to stay in hospital because he was still very, very sick. We also hinted at the big possibility that he may never come back home. She stared at us in disbelief, then turned away, saying we’d have to wait and see. The word ‘wait’ made us panic since we knew Mathea was already at the age when she would not forget to ‘wait’.

The Easter holidays were over, and the following day, she had to return to school. She was eagerly waiting to tell everyone she now had a baby brother. How could we tell her not to? We decided to call her teacher, and we wrote notes to the van drivers, explaining the situation. We also went round every shop in our area, instructing them not to ask Mathea about Ben.

Eventually, we got down to telling her the cruel truth: that she would never see her baby brother again. We tried to cushion it the best way we could, explaining that he was now in a better place. She has not gone through the different pain stages and the events leading to Ben’s passing away, and relies entirely on what we tell her. We think she has somewhat accepted the fact that he won’t be coming back, but still thinks about him a couple of times every single day. She still feels the need to show photos of him to those she realises never actually saw him. In her own way, she is treasuring her memories of him, but of course, she longs to have him back and it emerges clearly when she plays ‘pretend’ with her dolls.

Sometimes, I still get a feeling it was all a nightmare, or an illusion. The intense physical and emotional bond I had already formed with Ben is incre­dible. Sometimes, the pain and grief gets so overwhelming that it limits my functions, especially when I am at home, the place where I expect to find him. I feel a core part of me has been ripped away at a time when I was at the peak of happiness.

We were given a gift so dear, which we were forced to give up so early and unexpectedly. The deprivation is like a life sentence, which I have to live with forever.

Nothing could have ever prepared us for this. Our grief comes from the unconditional love with which we welcomed Ben into our family. This love is eternal and so is the grief. Today, I realise how strong the maternal bond can be: having to accept that there is no longer a present, an immediate need, and a future for Ben, is devastating.

I often wish I could smell him, or hold his weight in my arms.

The pain may change in intensity and manner of expression, but I don’t think it will ever go away. I know I might be happy again one day, but never as happy. Normality is now different for me because children are not supposed to die. Parents are supposed to die and leave their children behind. This is the natural course of life. Ben’s death means the loss of the future, of hopes and dreams.

Sometimes, the empty space is so real I can almost touch it. However, against all odds, I returned back to work two weeks after Ben’s death and found it to be a critical factor in the healing process. My work colleagues were so understanding and supportive.

To this day, I still haven’t managed to open the little embroidered bag the hospital staff gave me, containing Ben’s palm and feet stamps, and some of his soft hair. I look at it, but simply can’t get myself to open it. Similarly, I can’t get myself to visit Ben’s grave. I fear a relapse and that I would end up where I started from just after he passed away.

I have been close to seeking professional help many times, but I always convince myself that reading others’ testimonials and prayers is best at this stage. Sometimes, I wonder aimlessly about what I’d answer if I had to be asked how many children I have.

When we broke the news to people, other than our family, we got different reactions: some slammed the phone in complete shock and some were completely silent. Most found no words to express what they were feeling, or to even start to console us. The news spread fast, and because not many had had the chance to meet him in real life, they were desperate to see photos of him. So as a tribute to Ben, I uploaded a few on Facebook – the quickest and widest means to continue making his presence known and felt by as many people as possible.

We want Ben’s short life to matter not only to us, but to our families and friends, and to the world. For this reason, I find so much solace in talking about him.

Today, I appreciate even more that I have faith in God.

I know, deep in my soul, that Ben is being cared for in a better place by his own Creator. Thankfully, my religious beliefs give a different dimension to this experience. I have intensified my relationship with God as never before, and each day, I try to draw some new ways of comforting myself through readings from Jesus’ life and teachings. In seeking spiritual wisdom, I do not repress my grief, but help myself to express it in a way that gives me comfort and fills me with hope for the future. I feel this is the best way to pay tribute to my dear son.

This story appeared in Pink magazine, which was distributed with today's The Times.