Tag Archives: neonatal death

The Bracelet

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By Sue Elvis

We were anxious for Thomas to be baptised as soon as possible after his birth but the sacrament had to be delayed until he had been placed on a ventilator in the neonatal intensive care unit, and his condition had been assessed as stable. By this time, I had been moved to the maternity unit and it was Andy who arranged for the priest to come and baptise our son.
Father C placed a small white garment over our newborn baby, carefully avoiding all the wires and the tubes. And then with a sprinkle of holy water, together with the words, “I baptise you in the name of the Father and of the Son and of the Holy Spirit”, Thomas’ soul was filled with God’s life. He was given two Godmothers: my sister Vicky and my friend Cheri, and we all prayed that they’d be given the opportunity to guide and care for him here on earth. We all hoped his body would become as strong with life as his soul. But it was not to be. After a fleeting moment of life, just 28 hours after being born, Thomas left us and his Godparents, and joined God in Heaven.
Cheri was already the Godmother of our daughter Charlotte, who was two when Thomas died. We all realised Charlotte would grow up without any memories of her little brother. Thinking about this, Cheri decided to create a special bond between her two Godchildren, to hold them together despite the lack of memories. She wanted to give Charlotte something very special that would remind her that Thomas is alive in Heaven praying for his big sister.
When we went to the ‘viewing’ at the funeral home to see Thomas one last time before his funeral, Cheri brought along her gift for Charlotte. It was a delicate gold bracelet with a name engraved upon it. It was going to be Charlotte’s bracelet but the name on it was ‘Thomas’.
Cheri cradled Thomas in her arms, placed the bracelet on our son and we photographed Godmother and Godson for the first and last time.  Then she gave the bracelet to me for safekeeping: “Now Charlotte has a relic of her little brother which she can keep forever.”
The bracelet is not an everyday piece of jewellery. I keep it in my jewellery box and Charlotte wears it on very special occasions… like on her First Holy Communion Day when Thomas’ prayers joined ours as she received Our Lord for the first time.
Last September at the annual homeschooling camp, one of the fathers gave the girls a talk about relics. Mr D is well known for his interesting and stimulating talks on the faith, and I knew my girls would enjoy his class.
Charlotte came running up to me as soon as the class finished, eager to share what she’d learnt:  “We learnt all about relics today! We learnt how a relic can be a part of a saint like his hair or a bone or it can be something that belonged to and touched a saint like a habit… or it can be something that has been touched to a relic of a saint. And I told Mr D I have a relic of Thomas: Thomas’ bracelet that touched him and is now mine. Can I take it tomorrow and show everyone?” And so the precious bracelet was once again removed from my jewellery box and shared with the girls of Mr D’s class.
Charlotte is now 13. I guess I could give her the bracelet but she is quite content to leave it in my care. She knows she would be very upset if it ever got lost and she isn’t quite ready to take that risk upon herself. But one day the bracelet will be all hers.
The bracelet is treasured because it is associated with our child. It reminds us that Thomas is in the presence of God where he can intercede for us. Our son, our saint in Heaven, is praying for the special people in his life: his parents, his Godmothers, his sister Charlotte and all his family. And that is a real blessing.
Thank you Cheri, my dear friend. You used that short moment of time we had with Thomas to turn a bracelet into a relic, a precious bond between brother and sister.
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The Thomas Dress

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Imogen never had a new dress until her brother died.
She was five years old and although she had plenty of pretty clothes, she’d never had a dress chosen especially for her, a dress that hadn’t previously been worn by her older sister or cousins. It was a very special day, the day we went to town to buy Imogen her first brand new dress.
As soon as we entered the children’s boutique, we saw the perfect dress. Imogen held it up under her chin, her eyes large, her smile wide. It was pale pink with puffed sleeves and the skirt was perfect for swirling. A Briar Rose dress. A real little girl dress.
The shop assistant hurried up to us. “Oh, you will look so pretty in that dress. Is it for a special occasion?”
“Yes,” Imogen replied. “It’s for my brother’s funeral.”
Thomas’ death was not a sad time for Imogen. She was the only member of our family who didn’t cry during those traumatic days. The photographs show her smile beaming out amidst the tears of her siblings and her parents.
Shortly after Thomas died, we gathered together our other children and explained that Thomas was now in heaven with God. Imogen replied, “Then why are you crying? It’s good. Thomas is alive with God. Don’t you want to go to heaven and be with God?” I remember wondering how Thomas’ death could be good. It didn’t feel good. Perhaps all that about heaven and going to God was just a pretence: something said to comfort bereaved parents.
There wasn’t a lot we could do for our son. Unlike other newborn babies, he didn’t need us. But we could give him a beautiful funeral. This would be the last event of his short life on earth and I was determined to make the most of it. Of course, it was very distressing farewelling a baby we’d only had with us for a day. We’d had such hopes for his future and now there was no future. But even though I couldn’t prevent the constant flow of tears, I didn’t want his funeral to pass in a blur of sorrow. I wanted to remember every moment. I wanted it to go on forever. However, like all events it came to an end and before we knew it, we were processing towards his open grave.
Father Francis carried Thomas’ tiny coffin. He held it so reverently as if he were carrying something very precious. Afterwards, he confided to us what an honour it was carrying our son; he could feel a special presence; he was carrying a saint.
There were many families at Thomas’ funeral. Children of all ages gathered around the grave. There were little girls everywhere, skipping among the tombstones like pretty butterflies, their pastel dresses swirling, their hair ribbons fluttering, their hair streaming out behind them in the breeze. Despite severe frowns from solemn parents, single flowers were gathered from graves until each little girl had a beautiful posy. And surrounded by all her fellow butterflies Imogen was having a perfect day. There she was in her new pink dress with all her friends, enjoying the spring sunshine as if she were on a picnic.
Thomas’ funeral was beautiful. So many friends and members of family shared this painful but special day with us. The charming old church was full; the music was hauntingly stirring; the homily was moving. But one of the most beautiful of all my memories is that of Imogen dancing between the graves as if she were celebrating the short life and death of her tiny brother.
Death is a normal part of life. It is extremely sorrowful, excruciatingly painful. However, it is not something dark, something to be hidden away. While we were mourning the loss of our son, it was so consoling to be reminded that there was still beauty in life: a glimmer of hope for the future.
A few years after Thomas’ death, Imogen’s goldfish died. She cried as if her heart were breaking. I was a bit bemused. “You didn’t cry when your brother died, “I remarked. “Why are you so sad now?”
“I didn’t understand then, Mum. Even though Thomas was going to God it was still sad. I would have cried if I’d been older”. She wouldn’t have thought only of her new dress.
We have still got that dress. We call it The Thomas Dress. Imogen loved that pale pink creation. Charlotte in her turn wore it. Although she had only been two when Thomas died, she knew it was a very special dress. The dress is a little faded now. Sophie and Gemma-Rose will not get to wear it. But we will keep the dress. It connects a sister to a brother. I will always remember Imogen skipping along in it, a ray of sunshine falling on that day of grief.

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Perfection

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A few days before Thomas was born, I visited the needlework shop. I wanted something to keep me busy during a prolonged stay in hospital. Well, I hoped I was going to have a prolonged stay. If Thomas’ diaphragmatic hernia wasn’t healed miraculously then I hoped the doctors would be able to save him through their expertise. And I knew they would need time, time when I would sit in the hospital praying and waiting for him to get well enough to come home.
I chose a Noah’s Ark cross stitch and at once started work on it while I waited to go into labour. Just before we rushed out the door to go to the hospital, I shoved the kit into my bag.
But I didn’t think of the cross stitch again until we’d returned home after the birth and death of our baby. The kit remained in my bag forgotten as we spent hours keeping vigil by Thomas’ side as he struggled to live. I didn’t end up having a prolonged stay in the hospital. Thomas died at 3 pm on the second day of my stay and we were home again that evening.
The first day after Thomas’ death, Andy and I were so busy. We had phone calls to make, the priest to visit, a funeral to arrange… The next few days were equally busy. A constant stream of friends visited, we had to shop for funeral clothes… Finally we had the funeral itself to attend.
And then we stopped. There was nothing left to do but grieve. I started a journal and began writing about Thomas, the pregnancy, his birth and his death. And as I was writing I came to the decision that I wanted to do something for Thomas. I wanted to make him something that would be a visible reminder of his presence here on earth.
I remembered the Noah’s ark cross stitch. That seemed to belong to a different world, a time when I’d had hope. I no longer wanted to finish it. I rolled it up and put it away. But it gave me a new idea. I decided to cross stitch a picture with Thomas’ name and birth and death dates. I returned to the needlework shop and chose a piece of beige linen and a pattern of an old fashioned house flanked by fruit bearing trees. There was room in the centre for a verse, a name and a date. I drew a pattern for the words:
To You O Lord we humbly entrust
Thomas Augustine Elvis
So precious in Your sight
And then I got to work. For weeks I sat on my bed and stitched and thought of Thomas and his death. I pondered such questions as: Why didn’t God heal Thomas? Why do we suffer? What does it all mean? My fingers worked while I had an unending conversation with God.
Gradually I began to take interest in other things but each day I still found some time to work on Thomas’ embroidery. I had a reputation for starting a creative project but never finishing. This time it was going to be different. I had to finish because this was for our son. And, despite the pattern having some complicated stitches needing a high level of skill, I was determined the piece of needlework would be perfect.
I started to get excited when I began work on the outside border. I was on the home stretch. I picked up the pace as I imagined taking my piece of needlework down to the shop to be framed. And then I discovered a mistake. It wasn’t a major mistake. Probably no one would have spotted it. But I had decided that only perfection was acceptable. I undid a large amount of work and patiently redid it correctly.
Finally the embroidery was ready for framing. I flew down to the shop with it to choose a frame. Two weeks later we were hanging Thomas’ cross stitch on the wall where it could be seen by everyone who came to visit. I thought, “Now everyone will know Thomas existed. There on the wall is his story.” I imagined someone seeing my cross stitch in many years to come. They would know that a baby called Thomas was born who lived for one day and his mother loved him so very much she embroidered a beautiful cross stitch for him.
The year after Thomas died my friend Amanda’s baby was stillborn. Remembering how much comfort my cross stitch had brought to me, I decided to embroider one for her baby. The baby was called Faith and I used a verse about faith from the Bible as the central words. By this time I was pregnant with Sophie and I spent long periods of time resting and stitching and thinking and praying about babies.
Amanda lived a couple of hours’ drive away. My husband, Andy offered to deliver the finished cross stitch to her.
When Andy returned home he was carrying a large frame. For a moment I thought it was Faith’s cross stitch. But it wasn’t. It was a large picture of our Lady of Guadalupe. Amanda had given it to Andy saying, “This picture was on my wall but I had a feeling that it wasn’t mine. God intended it for someone else. Only I didn’t know who was supposed to have it. I thought at first it was meant for Joan. I invited her to afternoon tea but Joan didn’t pay any attention to the picture at all. She didn’t even notice it hanging on the wall. I decided it wasn’t meant for her after all. And then today when you arrived with the cross stitch from Sue, I was absolutely sure Our Lady of Guadalupe is for her.”
Amanda’s story and her gift touched my heart so deeply. I felt we were bonded together by our exchange, just as we are bonded together by the deaths of our children. I can imagine Thomas and Faith together in Heaven and Amanda and I are united here on earth by our grief.
I haven’t seen Amanda for some years now. But I will never forget her. Every time I look at Our Lady of Guadalupe I think of her and am grateful for her gift which I feel has helped me to heal.
Our Lady of Guadalupe is hanging on the lounge room wall right next to Thomas’ cross stitch, Thomas’ perfect cross stitch. Or is it perfect? One day, I was standing looking at the embroidery and I noticed the bottom line of words is slightly out of line. One word looks like it is sagging. My first thought was, “The framer didn’t do a very good job. He didn’t stretch the linen tight enough.” And then I realised I had no one to blame for the imperfection except myself. Despite my efforts to be very careful, I had sewn the middle letters of one word slightly lower than I should have done.
I smile now when I look at the mistake. It is a reminder to me that I am not perfect. I strove for perfection, thought I’d achieved it but in reality I had failed. It’s funny isn’t it, how we often don’t see our own flaws? We think we are pretty good. But then one day God opens our eyes a little wider…
Thomas, together with all our lost babies, is perfect. He is so very perfect in Heaven. And here I am on earth, still striving away, still working towards that goal. One day with the help of Thomas’ prayers and those of Our Lady of Guadalupe I will get there. One day…

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The Gift

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 I travelled to the hospital, my mind full of thoughts: I’m meeting Andy at the park…the kids can play on the swings with him while I am busy…How long will the ultrasound take? Half an hour? We might be home by 6 pm.

It was a day like any other day. A special day because I was to see our baby for the first time. But still, just another day. A secure, a safe, a predictable day. My biggest worry of that day was, “Will we get home in time for dinner?”
I lay on the couch in the ultrasound room. There on the screen was our baby. Oh, he was so beautiful. My heart filled with love and overflowed.
My eyes were on the screen watching our tiny baby floating about in his little cocoon. I didn’t really take much notice of the technician disappearing out the door. A few moments later he reappeared with a doctor.
And then life which is always so precariously balanced, as if on a knife’s edge, dipped and then turned upside down. Everything was tossed high up into the air, and when it all fell back down again, everything looked the same but was not the same. Life would never be the same again.
“I’m sorry. We’ve found a problem with your baby. He has a diaphragmatic hernia.” A compassionate look, a touch on my arm, and the doctor continued. “The internal organs have moved through the hole. They are in the lung cavity. There won’t be enough room for the lungs to grow.”
“Even if there wasn’t a hole, the lungs haven’t had a chance to grow much anyway,” I stammered, trying to understand. “There’s lots of time…Something can be done.”
“I’m sorry…nothing… There is a very small chance that your baby will survive but I don’t really think that is probable. It is unlikely that he will have enough lung tissue for independent breathing.”
My mind froze. I couldn’t think properly. I struggled to make sense of it all. Not enough lung tissue? That meant death. The baby would die? How could he die?
And suddenly I understood clearly. It rolled in and hit me hard. I was trapped down a one way street. I couldn’t return. I couldn’t go back those few short minutes to a time which was safe and predictable and held promise. No, I was heading down a long, dark tunnel towards sorrow and nothing could save me.
I knew it didn’t matter what I wanted. It didn’t matter that I was frightened like I’d never been before. It didn’t matter that I thought I would probably die under the weight of the suffering. It didn’t matter if other people had a choice about whether to continue their pregnancy or not. Me? I had no choice. I could not kill my baby. I knew what was right and what was wrong. I had a gift, the gift of my Faith.
It was never suggested to me that I abort my baby. I was so fortunate. Why was an abortion never suggested? I’m not sure. Perhaps the doctor realised I would never agree. Perhaps the doctor, who had looked so gently and compassionately into my eyes, as he gave me the unwelcome news, was the kind of doctor who could never kill a child.
The ultrasound was over. I stumbled off to the bathroom, still dry eyed. But as soon as the door closed behind me, the flood gates flew open. Tears streamed down my cheeks as I sobbed noisily and uncontrollably.
Of course Andy knew something was wrong as soon as he saw me. “Our baby is going to die!” And even though Andy enfolded me in his arms and covered me with his love, I knew he couldn’t change anything. He couldn’t save me. He couldn’t protect me. He couldn’t bring back my safe world.
I started praying for a miracle of healing for our child. I could not give birth, hold our baby, watch him die and bury him. It was more than I could cope with. I was not that strong. And so I could not accept the prognosis. I thought, “It’s up to God. God can heal my baby. God is more powerful than the doctors. It doesn’t matter what they say. I know there is a possibility that God will intervene and save my baby. He knows I am weak. Perhaps…”
The doctors would not talk about miracles. They wanted me to prepare myself and our children for death. They would not give me hope.
Over the next few months I prayed and I prayed. Every prayer I could think of. If only I filled my prayer bucket, God might grant me a miracle.
And then gradually I began to accept the situation. I began to add, “If it is Your will, Lord,” to my pleas for healing. “I am willing Lord to give you my baby. But please don’t ask me. You know how weak I am. I will not survive.”
It was a very long five months. I could not think past the birth. Whenever I did, I saw a dead child I was too frightened to hold. I saw a tiny coffin. I saw a yawning, open grave. I saw a terrified woman bowed down by grief.
And then right at the last moment, the fear receded a little and I began to feeI excited. I had come to the realisation that our baby couldn’t stay safely within me forever. I began to wonder what he would look like. I began to anticipate meeting our child for the first time. Perhaps God had healed him anyway and there’d be no need for sorrow and tears. God gave me this period of calm and hope just before I had to face the trauma of his birth.
Thomas was born. He had not been healed. Within seconds of his birth, he was being wheeled away to the neonatal intensive care unit. “Wave to Mum!” said the nurse cheerily as she pushed our baby out of the room. But I could not see him. He was too far away. My eyes were too full of tears.
It was some hours before we could visit Thomas. We had to wait until the doctors had stabilised him before we were allowed to enter the unit and meet our new son.
There he lay surrounded by whirring equipment. His face was partially obscured by a tube. He’d been put into an unconscious state to keep him immobilised and to reduce the stress on his little body.
I stood and looked at him through the tears rolling down my face. He was beautiful Just beautiful. He looked perfect despite the tubes and wires. There was no sign on the outside that he was imperfect on the inside. And I thought, “How could anyone contemplate killing a little baby. This is the same baby I saw on the ultrasound all those months ago. He is now a lot bigger. But he is the same baby. I couldn’t kill him now. I couldn’t have killed him then.”
Thomas only lived 28 hours. He died in my arms, his family around him.
We thought we’d suffered greatly during Thomas’ pregnancy. That suffering was nothing compared to that which descended upon us after Thomas died. All my nightmares became reality. Sorrow and grief were waiting for me, waiting to pull me down into a pit of despair.
Eventually joy did return to life. I did survive despite thinking I wouldn’t. God knew me better than I did. He knew I had more strength than I cared to admit. He gave me His own strength. He knew I could give birth and then watch my baby die. He knew I could hold my dead child and then bury him. Because He knew how much I loved my child. You can do anything when you love.
And so life returned to ‘normal’. But it was not the same life I used to know. No. Life had changed forever. On the outside I look the same. Not many people would suspect the presence of grief locked away in a safe, secret place within me. But it is there.
I often think about what might have happened had we not had the gift of Faith. What if we’d had no support from our family and friends? What if we’d terminated Thomas’ pregnancy? What if we’d killed our son?
We would not have avoided any of the suffering. But the suffering might have been compounded by guilt and uncertainty. We might have asked, “What if he had survived? What if we’d killed him and God intended to save him?”
But there is another reason I am so very glad we were blessed with this gift. Faith enabled me to continue with Thomas’ pregnancy and give birth to our baby. And so we got to meet our son. We were able to hold him in our arms. We got to kiss him and whisper, “I love you Thomas!”

Was Thomas aware of this love? Did he know how very difficult it was for us to say goodbye? Did he know how much we wanted him? I am sure the answer is “Yes”.


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