This page shares some of the experiences from the parents we interviewed during our research. We hope that this might help parents who are living this experience to be prepared on what to expect and knowing that they are not alone. Some of this information might also help relatives, friends and professionals to have a better understanding of how they can support bereaved parents. Please note that all quotes will be anonymised replacing the real names and personal information.

 

Sudden Infant Death: Parents’ Journey



Standard Routine Procedure

When a baby or a child suddenly and unexpectedly dies, parents have to expect that the death of their child will be investigated. No matter if the child dies at home, or in the hospital, or in any other place, it is a standard routine that the police are involved. Parents will be interviewed in relation to what happened. In addition, police officers will also collect evidences from the place where the baby died. Parents have to wait for the permission before having the baby’s things back, or enter in their house while the investigation in on.

After we had taken him to the mortuary, the police came to talk to us, because obviously it was unexpected, so they needed to do their investigation and then we had a meeting, just in a little side room in A&E and they talked to us and then they drove us home. They did the things they needed to do, take some samples of milk we had given him the night before, took some photos” (Ivy, baby boy died suddenly)

Although this might add some discomfort to an already vey distressful moment in the life of any parent, it is important to think that it is a standard procedure. As explained by the police officers who participated to our research, investigations are aimed to exclude any crime, rather than looking for a guilty. While parents stressed to be rationally aware of this, we had contradictory reactions from the parents we interviewed. Some of them found that police officers were quite emphatic and helpful.

I have actually read some awful stories of people being treated as criminals almost but I have to say we weren’t. I think the police and everybody were very sympathetic towards us.”(Sam, baby girl died suddenly)

However, this process might still result quite upsetting.

All the police cars, it probably look like some kind of murder scene when that happened because all the police cars out in the road. And it’s such a small town I think that’s how things …that’s what I hate when look back and I think all of that part of it” (Sam, Baby girl died suddenly).

 

 

Improvements in Procedure

However, in the last years, campaigns made by the Lullaby Trust allowed the transformation in the stigma related to cases of sudden infant death and the improvement in the procedure made by the police in these circumstances.

When the baby is in the hospital and the cause of the death cannot be explained by a doctor, a coroner will be involved and MIGHT ASK FOR AN INQUEST. Some A&E offers a bereavement room for parents so that the parents can spend some times with their baby before the post mortem, but not all hospitals might provide this service.

 

 

Determining Cause of Death

After the baby is took to the mortuary where a coronial post-mortem will be conducted in order to find out the reason of the death. Although the first aim of this investigation is to exclude any criminal causes of death, this looks also at any possible causes. Not all baby who died suddenly are diagnosed as SUDI, but there might be other causes which could be useful for future pregnancies or to avoid that this might happen to other babies. With the post-mortem, parents will be asked for the consent for tissue retention. While the post-mortem in Sudden Infant/Child Death is compulsory, you can decide if you want that samples will be kept by the hospital for future investigation or if you would like to involved for future researches.

Post-mortem is linked to contradictory emotions. Many parents are happy to have it done because this might help to understand what happened to their child.

“I was relieved because I thought…a post mortem means that they might be able to find something, because I just couldn’t rationalise what happened” (Hannah, baby boy died suddenly)

However, it is a quite distressing moment for the parents. There is the apprehension of what is going to be done to the child- in particular, in relation to the idea that people have of post mortem from the movies. Police are trained to address questions on this matter or you might ask information also to the healthcare professionals in the hospital.

Not all hospital has the facilities to make post mortem on babies, so, at times, they must be moved to other mortuaries to have it done. This has been reported as another distressful moment for the parents as they don’t want to have their baby transported so far from them. While it might be useful that professionals provide those information to the parents, it is fine to ask for information.

At the end of the post mortem, the coroner will make a report on the death of the child. Some of the parents we interviewed told us that this might take a quite long time before getting it and this might be a very difficult moment for the parents.

“I don’t know if it’s a normal experience, really with the post mortem, stuff in relation to the inquest, but it seemed to be a very drawn out, longer process than what we originally thought it was going to be, which then led to us only getting information about the post mortem three days before the inquest.” (Georgia, baby boy died suddenly)

In addition, often these reports are made in very clinical and complex language. Some of them were able to ask to the same coroner who made it to ask for clarification, but, as not always the coroner is available or is in the same city they have asked to their GP or the Police family liaison officer, who can help during the communication between the coroner and the family. Having feedbacks on the result of the post mortem was found very useful by many parents in order to get a sense of closure. Stopping them to find a reason why that happened or if there was anything they could have done differently.

“Because Jim arrived one morning and said we’ve had the post mortem results, and I remember him saying Mia died, they don’t know why she died, there was absolutely nothing wrong with her. You didn’t suffocate her, you didn’t roll on her, there was nothing broken on her, she was perfect when she died. And I remember the immense relief. Because you thought you’d rolled on her.” (Karen, baby girl died suddenly)

 

 

After the Post Mortem

After the post-mortem, you might decide if you want to hold your baby at home, in the hospital or in funeral director’s premises before the funeral. Some hospitals might offer special room for this and they might also take care of the parents and relatives during their visits. This is another opportunity for the parent to say good-bye to their baby. Many parents have reported the fear of holding or seeing their babies after a post-mortem investigation. The majority of the participants to our research reported that it was fine to hold in their arms their babies.

“Once they had had him back from his post mortem…they’d done such a good job and I could barely tell that…so the lady who did it, the pathologist obviously had been very, very careful… So we were fortunate enough to be able to meet up with her afterwards and just said…thanks so much for being so careful with our little boy” (Hannah, baby boy died suddenly)

Many parents have found very comforting spending some more times with their babies before the funeral. After the post mortem babies are dressed and in particular parents reported to be reassured of holding and seeing that they baby has been treated with care. In particular, the attention of how they were dressed or the care of making them wearing a hat. However, parents might always ask to the healthcare professionals or the funeral director about the appearance of your baby before visiting him/her, just to be reassured, as suggested by The Lullaby Trust booklet “When a baby dies”.

Many of this facilities give privacy to the parents or to any other relatives or friends to say bye to the baby. It is important to stress that any DECISION IS UP TO THE PARENT. IT IS IMPORTANT THAT YOU THINK ABOUT IT AND DOING IT AS YOU WANT because it is a moment that it is going to stay in your mind forever.


 

A Funeral

Regarding the funeral, it is your decision if you want to hold a service. Some funeral directors provide funeral free of charge. At times, there are basic options that are free of charge but that require a little extra if you ask for any special feature.

 
 

 

Having children after a sudden infant death

Losing a child is always a traumatic event and in particular if the baby was healthy and there was no way to predict what happened. Parents reported to becoming overprotective and distressed after the arrival of other babies. The Care of Next Infant (CONI) scheme is provided to the majority of the family who had the sudden infant death of one their baby. The scheme provides support before and after the birth of their new baby with regular home visits by health visitors, use of baby check app and monitoring baby’s growth. Moreover, it provides monitors which pick up movement as the baby breathes and it will ring an alarm if movements stop for longer than 20 seconds.

During our interviews, parents told us the importance that this type of support was for them in particular because of the anxiety of having another baby after the previous loss.

“We were given support post birth as well through CONI, which is obviously the Lullaby Trust, to help us kind of rationalise our fears once the children were born as well. So I think that that was helpful really.” (Fran, baby boy died suddenly)