for when… it is thought one of the babies in a multiple birth won’t survive until birth or for long after birth

Being pregnant with twins (or more) feels like such a special and exciting time. Very sadly, sometimes things do not always go the way we hope and dream of and something goes wrong during the pregnancy and it is thought that one of the babies isn’t going to survive until birth or for long after birth.

This begins a time that feels unreal and full of very mixed emotions. A time of uncertainty, a time of grieving for a little baby that has an uncertain future but also thinking about the healthy baby and it’s needs.  It means looking towards a birth that seems difficult to imagine or to know how to plan for. It means being completely uncertain about how the next few weeks or months will unfold and whether the baby will survive until birth or not and then for how long. There are also feelings of hope against the odds that the baby who is unwell is perhaps not as unwell as it is thought. It means dealing with family, friends and even strangers in a situation that seems completely off the map. It means being asked to make decisions that no parent should ever be asked to make.

In the early days after hearing the news of your baby, things can seem confusing, numb, maybe a little like you are moving in slow motion. The mother may also have her own health issues that come along with pregnancy which are often increased n multiple pregnancies. Everyone’s feelings and reactions are different but there are some important things that can be done in these early days which most parents find helpful and which allow you to approach the time of birth with a little more preparedness and knowledge.

It is often very difficult for doctors to predict how long the baby will survive during the pregnancy or how long it will survive after it is born if it is not stillborn. It makes it a very uncertain time for parents who don’t know how short a time it will be for them to say goodbye to their precious baby and how to share the time with the healthy baby and it’s needs.

Find out some information about the sick baby’s illness so you can have some idea about what to expect about the severity of the illness, the symptoms and also about how the baby will look when it is born. As parents, we tend to focus on the beauty of our child and we notice this much more than any “imperfections”. Most parents have found their baby looked far better than what they thought they would and most parents are very glad to have seen their babies.

Take plenty of photographs together and apart with your surviving twin (if this is possible) and with your family, and taking footprints, handprints, is so important.  If the baby is too small or fragile to dress or handle often, wrapping your baby in a tiny blanket can be beautiful and many hospitals provide little baskets. Even if the baby does not look the best, still take photographs or get someone else to help. These will become precious and art work or digital work can be done on original photos to make babies look they way they would have had things gone differently, if you feel later you would like to do this.

Gather other mementoes from their birth… hospital cards, bracelets, locks of hair, baby blanket, measuring tapes, anything that you think will later become meaningful to you. No one usually regrets the time they spent or the things they did for the baby… only that they wished they could have done more. Try not to miss any opportunity and do all the things you would like to do… no matter what you think others might think… don’t be afraid to listen to your heart.

Something as parents we never wish to do is to have to organise the funeral of our children and quite often this is our first experience of having to organise something like this. With all that has just gone on it is quite a daunting thought. Take your time and don’t feel pressure to hurry. It is your choice to do whatever you feel is right for you and your babies. Time can be taken to allow a mum to recover from a difficult birth so she can take part in the funeral arrangements and attend the funeral itself. Choosing the way to honour your baby that works best for you and your family plays an important part in the grief process. There are probably less rules and restrictions than you imagine regarding funerals and burial. We encourage you to refer to the Sands leaflet on “your baby’s funeral” for some more details about options for funerals, transporting babies and burial. Many parents find it helpful to make some arrangements before the birth since they have this opportunity while others find it better to wait until after the birth. There are no right or wrong answers, just what you feel is right for you at the time.

Parents often have many questions as they go on to raise their surviving multiple. How do we celebrate the life of our surviving child at the same time as honouring our child that has died? This often raises the most strongest feelings around birthdays and anniversary times. How to we tell our child about their twin? Will our child grow up to be happy and contented? These are things we may not be thinking so much about as we leave the hospital or maybe even in those early hectic days of sleepless nights and endless nappies but later as we journey on we are quite often surprised by the depth and the on-going nature of our feelings.  It can be most helpful at this point to read others stories and find ways they have raised their survivors so that we can go on with confidence and the knowledge that we aren’t doing this alone.

From our experience with so many twin loss families, we can encourage you to know that it seems to always be helpful to talk to your survivors about their twins in a way they can understand for their age. It seems to always be good to include these precious children in the story of your family and talk about them whenever it feels right. It seems that when this happens, survivors have every chance of being wonderful, happy people but with a unique and special story and outlook to their lives.

It is very important to talk to anyone who understands and is willing to listen. Knowing you are not alone is an important part of healing. Many parents have found it helpful to talk to others who have lost twins (or more) and we encourage you to make contact with us at Twin Loss NZ.

Our quarterly magazine Hearts & Wings is the main way those who have lost twins can be connected together and for many it is the only way. Inside, there are stories, poems, articles and an anniversary column, “Always in Our Hearts”, where our lost twins names appear in print… just another small way to acknowledge their precious lives.

Take care and do seek out all the help you can find at this time and in the future… it doesn’t matter how long ago your loss happened… it is never too late to be in touch or to create memories or remembrances or find new ways to honour your baby.