We have been contacted by many parents, and are grateful to all parents who took part in our research and the films. Some parents have shared their stories in writing.
We hope to add more stories. We know that many families find it helpful to hear from other parents with similar experiences - if you would like to share your story with us, we would be pleased to publish it. Please contact us.
Video stories
Grieving in a church of strangers: Claire and Craig
Staff never ask what you think: Janette & Sophie
Response from nurse and support from Registrar: Nadia & Martin
Written stories
Finn was born, healthy weighing 1.5kgs, but Sam, born weighing 1.6 kg, was lifeless. After nine minutes of resuscitation, doctor’s finally regained his pulse. Mercifully, still under general anesthetic, I was spared the experience. After twelve long hours, Sam died peacefully in his dad’s arms. He had suffered severe blood loss, caused by an undetected cord defect, and nothing could be done to save him.
I remember feeling so utterly alone – like I was the only person in the world that this could possibly have happened to. Although supportive, my family and friends couldn’t possibly understand the complexity of my conflicting emotions. Many people chose to focus on Finn, as if I had only ever been pregnant with a singleton baby. They would often congratulate me on his birth whilst completely ignore the fact that I had just lost a child.
This left me feeling frustrated and angry. All I wanted to do was talk about my experience but I felt, most of the time, that no one would let me.
The hospital where I delivered the boys and where Finn was in NICU were kind, but very insensitive to my loss. It was clear that they had absolutely no idea how to handle the situation. We were not encouraged to spend much time with Sam after he died, no one offered to take photographs and we were not given any mementoes, such as hand or footprints. Even his birth identification cards were discarded by NICU staff after he died.
I believe the lack of understanding around the complexity of a twin loss, really hampered my grieving process. During both my and Finn’s stay in hospital, new nursing staff were unaware that I had just lost a baby. We were continuously asked insensitive questions and exposed to other happy parents of twins in the NICU. The NICU staff, while fantastic with Finn, never made any allowance for me as a grieving mom. Even my obstetrician and pediatrician made me feel like I was making too big a deal of my loss.
The mindset I encountered over and over again was that I had one healthy baby and therefore I should be happy. I remember feeling like I was going completely crazy. I wanted to scream out my loss just to get people to acknowledge the severity of what had happened. I felt the constant need to remind people that one healthy baby does not, in anyway, cancel out the death of another.
It has been almost six years since Finn and Sam were born, and whilst I can now cope reasonably well with other twins, I still find seeing them quite difficult. It reminds me of everything I lost – not just my son, but my identity as a twin mum. I don’t think this will ever go away, you just learn to live with it.
Kate Polley lives in Cape Town, South Africa together with her husband and four children. After experiencing the loss of one of her twin sons, Kate wrote her first book ‘Sam and Finn’ to share Sam’s story with her surviving twin, Finn, as well as her family and friends. Demand for the book spread and it was published and distributed worldwide, providing hope and comfort to many other families who had also suffered the devastating loss of a twin.
Through Kate’ dealings with bereaved families, it was often requested that the book be personalised with a family’s own child’s name. Hence, In collaboration with her publishers the second, personalised, non-twin specific version of the book was created. Since then there has been a whole range created of personalised child loss books created.
These are a valuable resource for all who have experienced the tragic loss of a child, these books are the perfect way to share your own child’s story with your family and friends. A gentle story of hope, it will remind you that we can experience the love and joy of a loved one,even when they are no longer with us here on earth
2. After week 24 I felt worse and asked for a general check-up. After the diagnosis of HELP-Syndrome I was admitted as an emergency, and after four days we were told our twins needed to be delivered at 25 weeks gestation. Within half an hour we had to made a decision about our twins: 50 % they will survive and 50 % they will die. From the 50% of surviving there is a risk of 80% that they will be disabled and the clear question was: “What do you want?” Finally my husband was faced with another question: Do you want the children or your wife .... we do not know if either of them will survive! My husband sat for more than 4 hours without any information. I was not informed about my situation, but I saw tears in the eyes of my parents and my husband. So I knew that something must be wrong with me as well.
3. On February 17,1997 Lena (290 g) and Lukas (515 g) were born and admitted to the NICU. I also was very unwell and was admitted to ITU for 4 days with fluid on my lungs. I only saw my children on photos after 2 days. The only person who congratulated me on our babies was the nurse in my Intensive Care Unit two days after delivery. She woke me up and said: "Congratulations for your twins." I will never forget this because nobody else had congratulated us. The first days my husband had an unbelievable job. He had to move from one unit to the other and it was not clear if or how we would survive. Nobody was there for him, just the information that 'anything can happen'.
After 4 days I left ITU and went onto the postnatal ward close to the NICU, but I couldn't walk because of my large caesarean section wound. Also, I did not want to stay on a normal postnatal ward. To see every day the happy mothers with their normal babies was too much stress for me
4. On the 4th day I saw my children for the first time. I cannot explain how nervous I was. Everybody tried to prepare me for the shocking picture of our babies. I had no idea what they meant, but as soon as I saw Lena I knew what they were meaning. Lukas was small but had a nice colour, but Lena had high frequency ventilation and she was so extremely small with a weight of 290 g. She was covered in bruises because of the treatment with infusions. I cried and wanted them to stop the treatment at once. I was totally shocked and they brought me out of the NICU. But again I was not offered any psychological support! Neonatologists and nurses did their best at this time and I am very grateful for this, but it was unbelievable that we got no support in such a nightmare and traumatic situation
5. After 6 days I dreamt in the night that Lena died and I prepared the burial. I woke up and knew something was happening with Lena. On this morning the head of the NICU came into my room and told me that Lena had a brain hemorrhage and she will die today. I should organize that my family come and I should come at once to be with her. Lena died on that afternoon in my arms with a small smile on her face. A friend said later: An angel picked her up that’s why she was smiling. Even now, this sentence was so helpful for me! In this situation my husband and my parents as well as other family were with me. My sister in law made photos from this day. This and the musical doll box is the only memory we really have from her except the Polaroid photo from the first day. I am so grateful for this memory! A pastor came and made the emergency baptism and the head of the NICU and the nurses were with us. Some important things I missed at this time was to give her a bath, to wear clothes we had chosen, and to take her to the pathology department. After one week we had the burial with a white balloon that goes to the heaven and a gravestone with a painting from her musical doll box.
6. The real surprise for us was that Lukas was getting better and better. It looks that Lena gave him her power. But in our hearts our big worry was that Lukas would not survive either. We visited Lukas every day and I stayed the whole day in the NICU, but sometimes I spent the whole day crying. When other babies had problems or Lukas had an infection I became extremely anxious. One day a nurse said I should stop my crying or she will not allow me to visit my son. Some days later I came to the NICU and heard that Lukas was 'kangarooing' (kangaroo - skin-to-skin care) the first time with a nurse at night, because he was crying. Finally I came to the NICU and Lukas had a fresh diaper and I was not able to do it. Changing the diaper was for me the highlight of the day, so I was so disappointed and could not believe that the nurses did all these things without the respect of us as parents.
7. After all of this things I spoke with the head of the unit that I wanted every day to see and touch Lukas and that Lukas is our baby and that we hope that they can change this. She was so shocked about my feelings that she discussed such treatments and care with her team and then it became better for us. Nevertheless we never received psychological support. When Lukas moved from the NICU to the local neonatal unit (SCBU) we had to start again with all these communication disasters. Lukas was in a three bed room with mixed twins and no one appeared to understand our feelings. I was told I should be happy that Lena died because she would be disabled if she had survived.
8. At this time I was not aware and I did not hear anything about developmental care but now I understand of course more why Lukas had so many problems after discharge and still has problems today. On the NICU and also later in the baby unit there was continuous music from the radio, it was always bright (with lights) and noisy. There was no such things as family-centered care or NIDCAP. Lukas still has problems, i think because he was spent so much time just lying on one side.
Before and after discharge Lukas had small hernia surgeries, but finally no other big problems. At home Lukas did not eat and sleep and we were stressed because of the long time spent in hospital, and the traumatic experiences with Lena and Lukas. My husband and I became ill and depressed and we saw that Lukas' development did not appear healthy. He did not start to crawl and walk and he was smaller than others. He did not eat really until he was five years old and we were so extremely stressed. After therapy we realized these were not medical problems, but psychological
9. We had very deep interactivity problems, because of our unprocessed feelings. It was a circle of stress and we received no support from anybody except my parents, although at this time they were both working. The medical check-ups were normal and they told us: everything should be fine and preemies just need a bit more time. We should have more patience. We were lucky that we were both pre-school teachers and we knew that we needed a second opinion. We asked a friend of us, a specialist in physiotherapy. She was so shocked about Lukas' development that she referred us immediately to an orthopedic specialist and the result was shattering. Both of Lukas hips were at high risk of dislocating and we have just a few weeks for a surgery. He needed immediate physiotherapy and it wasn't clear if he will learn to walk, but that his brain looks to have developed well
10. The second traumatic situation for the whole family was around Lukas' hip surgery. Once more we were in a unit without any understanding of our traumatic situation. Lukas did not get many pain drugs and cried all day and night. Without any psychological support we stayed 3 months in the hospital and 6 months at home with a cast from his chest down to his feet. I was totally depressed around this time and Lukas fled in a dream world. He was not Lukas anymore. He was Captain Hook, a fire fighter, a pirate or any other figures who are strong and powerful. When we said his name he did not react.
11. The situation changed when Lukas started to walk and started riding therapy. All these years I felt I was the co-therapist and not Lukas mother. I discussed this in a self-help-group and we give this feeling a special title: A stolen pregnancy and a stolen motherhood. Today I can say I miss the time to be a normal mother and having the opportunity to enjoy the first years with my son. During our time in hospital and afterwards, I was faced with the non-existence of support of any kind, the absence of public awareness and the lack of information and education for parents during pregnancy. I felt that no parents should ever undergo such awful experience. Therefore, in 1999, I decided to actively participate in the Munich-based local parent group, which I headed from 2001 on. Two years later, I became Chairwoman of the German umbrella organisation "The preterm born child e. V.”. Together with experts, I developed declarations, guidelines and information material for parents with preterm children.
12. The situation throughout much of Europe is distressingly similar and preterm children urgently need a voice not only within Europe – but also worldwide. So I decided to give up my job as a pre-school teacher and to assume chair functions in EFCNI (European Foundation for Care of the Newborn infant). I founded the foundation in 2008 together with experts and stakeholders.
Lukas, meanwhile, is 19 years old and a beautiful and nice young man. In July 2016 he successfully finalized his A-Level and wants to study to be a communication scientist. His dream is working in the future for the soccer team “Borussia Dortmund” as a press spokesman or in the marketing team. He goes daily to the gym, loves music and reading. The challenge for us as parents was to fight every single day for his right to grow up as a normal boy or young man. We mainly struggled with the understanding and knowledge of people in school systems or administration of institutions. On the other side we met people who were open to help and willing to learn about the challenges of preterm infants and the consequences in their development or the speciality of us as parents. It is important not only to support preterm infants to survive – it is important to help them and their families after discharge as well. Kindergarden, day-care and school systems are not prepared for the needs of former preterm infants and their families. Not all parents have the opportunity or power to fight for the rights of their children or live in a country or region where this is possible.
At 23 weeks and 6 days I did not feel well and went for a check up at the hospital, they kept me in and during that night I went into labour. I was very fortunate to be transferred to the RVI the regional centre. Despite trying to stop the labour Professor D had to do an emergency C section due to a prolapsed cord. Beth did not cry she just grunted and then Sophie came out and cried. The babies were whisked away and I did not know what had happened to them.
I was taken to recovery and after a while I was asked to agree to them stopping trying to resuscitate Beth, she was brought to me , she was wearing awful clothes and I asked Mam to go home and get some of her own clothes to wear. Beth was christened in my arms. I wanted both babies to be christened together but it was not allowed and therefore Sophie was christened on the ward without me being there. I held Beth for such a long time before I had to let her go.
Sophie was 750gms born and I had had only 1 dose of steroids and she was difficult to ventilate. Much later on that night I was taken to see Sophie, the incubator was filled with condensation making it hard to see this tiny baby. I couldn’t touch her.
Over the next few days life became very hard to deal with. I am a very maternal Mam and all the basic instincts of a Mam were impossible to carry out. I could not feed her, nurse her, bath her, change her nappy and worse of all my arms ached to hold her so badly. She was actually 6 weeks old before I held her for the first time. She was still ventilated and it was awful to hear the nurse say that is long enough now. She was my baby and I wanted to hold her. The nurse was doing the right thing as it is quite unsettling for a ventilated baby to be held too long. I continued to do Kangaroo care as often as I was allowed. At times Sophie was so ill I was not allowed to touch her (once again the nurses and doctors had to do this they were after all trying to save her life)
When I was not allowed to touch her I would talk through the incubator all day, when I could touch her I would stroke the side of her face and talk to her all day. As a baby at home and a toddler Sophie would go to sleep stroking my face in exactly the same way as I had stroked hers. When she was on trigger a senior sister recognized that she made more effort when she could hear my voice so she made a tape of me talking and she would play it during the night when Sophie was unsettled
I agreed to hold the funeral of Beth, I had held off because if anything happened to Sophie I wanted them to be buried together. A truly awful day.
Staff made little reference to Beth other than to refer to Sophie as the surviving twin on the ward round. I would get very upset when they had to stop feeding Sophie when she was unwell as I felt this was all I did for her and I would proudly hand over my expressed breast milk to the staff. Her first bath was also done by a nurse at about 10 weeks old with Aimee and myself watching.
Sophie encountered just about every possible problem, she needed her duct doing at 3 weeks. What an awful day that was. In those days you were not allowed to go with the baby to the hospital where the surgery was to take place, so my Dad stayed with me and just talked at me all day. I really did not think Sophie would return alive, but my little miracle did!
She then had cryotherapy on both eyes . The worst thing I think that happened was when her hand went black and I had signed consent for them to remove her hand. The doctors including a vascular surgeon from another hospital spent all day ringing all round the world to see if anybody knew of a drug they could try that would not cause a bleed on the brain. Eventually at the 11th hour a doctor in Australia I think suggested a drug to try and bit by bit from the wrist down her hand regained its colour. An amazing achievement by the staff yet again
Sophie suffered many infections and when she reached 1kg it felt like I had won the lottery. Changing her nappy was the highlight of my day. Leaving her was unbearable, but I had to go home to sleep and to see Aimee . On a weekend Aimee would come to the unit with me and the nurses would play with her and put oxygen tubes on her dolls. From this experience she herself choose a career as a neonatal nurse.
Sophie was on a lot of oxygen 1.5litres per minute which was a lot of oxygen to come home on but on August 11th Sophie was allowed home. A day of great joy and great fear. She was on a saturation monitor due to her dependence on oxygen. She was not allowed to meet other children as an infection would be too dangerous to her. She was also not allowed in aircon for the same reason.
Sophie had regular check ups and at about 14months Sophie came off oxygen. Feeding Sophie was a nightmare, this was due to scar tissue from ventilation. Feeding remained a problem until her teenage years. Sophie was very thin and would be sick most nights. At times she would have desaturations and she was therefore quite physically inactive as a child.
She was very bright at school and she was placed on the gifted and talented register for her ability in English. She received very good GCSE grades and went on to gain excellent A Levels in Human Biology , Geography and English Language. During her 6th form Sophie went to Africa and worked with children who were homeless, children who had aids and street children. In Sophie’s words it was like comic relief in front of your eyes, she described it as the best and worst experience of her life. I remember when she said she wanted to go to Africa I rang Nick hoping he would say no way can she go when in fact he was yeah of course she can go !!!!!
The death of Beth was not dealt with at the time by me and I did not realise how much damage had been done. When my daughter was pregnant I became very anxious to the extent that I could not go out to events I gave holidays away and I was so anxious it was awful. I had nightmares of babies in white coffins etc. I paid for medical hypnosis and I was diagnosed as having post traumatic stress caused by my daughter being pregnant and me not dealing with the death of Beth properly.
I would urge all parents who have a multiple pregnancy where all babies do not survive to get expert help at the time
From 6 years old Sophie worked as an ambassador for the charity Tiny Lives. She gave speeches in front of hundreds of people; she made a promotional dvd with 2 premiership footballers. She organised for the charity to be the charity of the year for a large local hotel for 3 years running. She came up with a plan for a reunion Christmas party to be held every year so parents and children can meet up and gain support from each other. This has gone on from strength to strength and now has nearly two hundred children there every year.
These are to name just a few. She feels a great sense of commitment to paying back, raising awareness of premature babies and their outcomes.
She then started university 2 years ago to study for a BSC in Child Health and her dream job is to work on the unit at the RVI and somehow I think she will achieve that !!!! The only thing the doctors have been wrong about was they thought would be in and out of hospital with chest infections etc but this has not happened. My thanks to the amazing team at the RVI for all they have done in particular Dr Embleton