Twin to Twin Transfusion Syndrome Australia Inc.

A Member Group of the Australian Multiple Birth Association
 

Written by Susan for her lost twin Devon Grace, born at 5.36pm on 9 February 2001, died at 8.20pm on 9 February 2001, due to the effects of TTTS and complications of prematurity. Never forgotten by Mummy, Daddy, brothers Reilly and Tyler, and twin sister Brianna and your new baby brother Cooper - thank you for this precious gift.. Our angel is at peace.

To my sweet baby girl,

When I found myself pregnant again after 2 beautiful sons - your brothers Reilly and Tyler - I was so happy. Then, when I discovered 9 weeks into the pregnancy that I was carrying 2 babies, I was absolutely stunned. When I was 17 weeks pregnant and found out that you were both girls, I was overjoyed! How perfect my life would be. It just didn’t get any better than this. You and your sister were named then sweetheart, Devon and Brianna. I carried you both proudly – I welcomed the congratulations and ignored the commiseration’s of the ignorant. I knew where you both were lying, and I would point to my swollen stomach and say, ‘Devon is over here, and Brianna is over here’. I could tell you apart by your movements, which were almost a personality in their own right. During the dreadful 2nd trimester when I was constantly sick and unbelievably fatigued, and I cried every day as I promised your brothers that soon, the twins would be born and Mummy would get better; have more time, more patience, more energy - I still welcomed every movement you both made. Especially you, because you seemed so much smaller than your sister, and so much quieter. But every time I went to the doctors, they seemed to find 2 heartbeats and they kept assuring me that all was well.

When I was 29 weeks pregnant, I left your Daddy at home in the Pilbara with your brothers, and flew to Perth for 48 hours. Just long enough to see the doctors, have a scan, and come home for another 5 weeks, until it was time to come to Perth with your brothers and wait for you both to arrive. I flew down on Wednesday 7th February and went straight to an appointment with the obstetrician. Then I spent the afternoon and evening with your Auntie’s and Grammy and woke up early on the 8th February to go to the hospital for your scan. My appointment was at 8.30am and I was so looking forward to seeing you both, and making sure you were growing well and that everything was okay. I had spent weeks worrying, feeling uncomfortably sure something wasn’t right. I just wanted reassurance to get me through the last weeks of waiting for your birth.

But the scan offered no reassurance – within minutes it was obvious that you were much smaller than Brianna, and showing signs of severe anemia, while your sister Brianna was showing signs of impending heart failure. Suddenly the specialists were there taking measurements and coming to a diagnosis – Twin to twin transfusion syndrome – which conclusively made you identical twins, something I had not known until then.

This was my greatest fear Devon honey – not only were you both sick, but I was being told that I was not flying home the next day, but being admitted to hospital. And that you both would have to be delivered within days. I was in shock. I was being told that premature delivery was the only way to save you both, but 11 weeks early? But they told me it should be okay. 29 weekers do well, the vast majority survive this early birth; that things could be done to help you – but also that every day you remained inside me would offer just that little bit more hope.

I called your Daddy and broke the news – and told him that he had to drive your brothers down to Perth and to pack enough for a couple of months. We agreed that he should leave the following afternoon, and would be in Perth by Saturday morning. We thought we had enough time for him to drive down. There was just so much that needed to be organised. We thought there was enough time.

On Friday 9th February I had a stress test in the morning – you didn’t do well little love, and they booked me in for another scan at lunchtime. You weren’t coping very well and there wasn’t any more time to wait. Inside me you would both die. Daddy had already left Tom Price and I had no way of contacting him, but you girls needed to be born within hours. Even then, I still had so much hope. It was all I had. You had held on for this long, you both desperately wanted to live. I wanted to believe that we were all going to get through this.

I remember clearly being in the operating theatre and all of the people in the room. Doctors, nurses, pediatricians, anesthesiologists. Lying there helpless, being cut open, waiting. To hear a little cry, to see a little face. Brianna was born first at 5.35pm – only 2 little mewls and she fell silent as they took her to one team. A minute later my love, you were brought into the light and taken to the other team. No cries from you my sweet. And then a doctor, leaning over me – telling me that you were very small, very sick, and that saving you might not be possible.

During the rest of that surgery as I was being sewn back up, I was immobile with shock except for the tears falling down my face; with such a pain in my heart and such cold fear in my soul, I was taken straight to NICU wrapped in a shock blanket. I couldn’t get near to you honey – all I could lift was my head as I tried to get a glimpse of you in between the nurses and the doctors surrounding you. You were so heart-breakingly tiny and so totally perfect. I had never seen a prem baby before, but I was not scared of you. I feared for you, I ached for you, but my baby, lying there, my daughter is all you were. After only minutes they took me to the other side of the unit where your sister was lying. So much bigger, looking so much stronger, but facing so many hurdles of her own. The activity around Brianna was urgent, but calm and controlled; the activity around you was frantic and chaotic. And I could only look on and pray.

Too soon, I was taken back to my ward and I remember so little of the intervening wait there. Time seemed to be standing still. I was in shock, and I was drugged up. All my sisters and your Grammy were there in the room, but I don’t remember speaking at all. Until the phone rang at 7.55pm and I knew that the nightmare was coming true. It was a nurse from NICU, telling me to come back. They didn’t have to tell me what for. I knew we were losing you honey, that you were dying. For this they would let me hold you. For this, I could put my arms around you to say goodbye. And then you were in my arms sweetheart. So many people were in the NICU, standing back, but waiting, still and silent. It was like an honour guard of medical personnel, honouring your short life, and paying their respects while you left us. I was aware of the feeling of being surrounded, but all I could see was you. Your eyes were closed, your body wounded from the intervention that could not save your life. No cries from you nor tears. A silent life that lasted for 2 hours and 44 minutes, when they pronounced you dead at 8.20pm. Could you hear my screams of anguish baby? In my heart and in my head? A silent screaming for your silent life. You just looked like you were sleeping Devon – so peaceful, so beautiful, and so beloved. I remember rocking you in my arms, whispering “ssshhh baby, ssshhh”. I didn’t know what else to do; I was your mother and I could not save you, nor bring you back. You could no longer feel my arms around you, there was no comfort in my touch, but if felt so right, to hold you. My longed for daughter – in my arms at last.

Baby, I have gone through so many years of life, and thought I understood pain and loss, but there is nothing to prepare a mother for losing a child. Words took on new meaning; words I always thought I understood. Broken-hearted, anguished, despairing, grief-stricken. And the overwhelming physical pain…….. I knew nothing before, I knew everything now. It is absolutely overwhelming, so totally consuming and so unbearably painful. I look back now, a little over a year later, and I realise that while I longed for release from this intense period of grief, that it was my gift to you my angel. It was all that I could offer you, my only way of being a mother to a baby that would never come home with me. I longed for you, I ached for you and I wept for you.

The days that followed became a sort of blur. Time should have been standing still – if I could have made it stop, I would probably still be curled up on the hospital bed with the blinds drawn, in the darkness. But there was your sister, still fighting for her life, and your brothers, unaware that they would tomorrow face a reality that children should never have to face. There was hope still that Brianna would make it through and she needed me to sit beside her, gently talking, gently touching, willing her to live. I felt so much sadness that you were now separated, but I also felt fear that she would go to join you. I knew you were there in those early days, lying beside her and giving her strength. You were deciding weren’t you?  Whether to separate or go on together? But you both knew that I would not bear that much pain so at the end of those first two weeks, you left her to my arms, and my voice, and I am so grateful for that. But you held her tight and carried her through those early days when the rest of us could only watch and wait.

Your Auntie Belinda stayed with me that first night – that 1st long night that brought unconscious sleep for only an hour at a time, before I would wake her to take me to your sister. And at 2am, to have you brought to me in the NICU while I sat with Brianna. The only time you were together again after your birth. I held you in my arms, while Brianna I could only touch with my fingertips. What a long desperate night that was sweetie – the first of many days and nights of weeping.

Then morning came, and I knew that your Daddy would soon be arriving – I had to talk to him before he reached Grammy’s house and I got through to him at 10am on his mobile. He was still 2 hours from Perth, and had been driving your brothers through the night. I felt so wretched to have to give him the news – that his daughter’s had been born and that you had already left us. He has written to you his own letter about that day and the ones that followed my love. You are never far from his thoughts.

Until I lost you, I had never thought of the reality of having to plan and attend a funeral for a child while still in maternity clothes – through the women I have met this last year, it is a sad reality for many of us. The day of your funeral I held you in my arms for the last time – those terribly empty arms that I had assumed would one day hold two baby girls. That was also the last day I felt you with Brianna – you left her then to us, and she missed you desperately over the next few days. She struggled so much after you left her; I cannot fathom the desperation that she must have felt when her identical twin said a last goodbye. I know that you are not sad or lonely now. You are never cold, never scared, never sick. Soft, gentle arms hold you and calm loving voices sing to you. But you remain close by watching over us all and keeping us from harm. I pray that you will always be near to give comfort to your sister as she grows into her loss. We love her so much and she has grown from a tiny little miracle into such a beautiful little toddler, with a smile that melts our hearts. There is so much joy in her and laughter. She has brought me so much peace and healing.

Whoever said that you cannot miss what you never had was not talking about a life taken too soon. I miss not knowing you Devon. I miss not holding you in my arms late at night, or bringing you from your cot in the morning, full of smiles of pure delight. I miss not seeing you beside your sister, or holding you when you cry, comforting you when you are sick. I miss watching you grow and showing you the world and seeing the joy your existence would have brought to your brothers, the way Brianna has done. And I miss the many, many ways in which your life would have added to all of ours.

You exist in our hearts sweet baby, and we are richer for it. You are part of the very fabric of our lives little love, and I believe that you are with me, watching over me; that you dry my tears with your sweet, soft little hands; that you sleep in my arms that always feel a little empty without you. Your presence is the reason for the calm that descends when the crying has ceased. Life has gone on since you went away, but you have never left us. We carry you with us always and we can only wonder at the precious gifts that you left behind in our hearts.

I love you my little angel. I know you know. I will hold you again one day, many years from now. But until then, dwell in my heart and make my life sweeter. Missing you my love.

Mummy

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(c) 2004 TTTS Australia Inc.