Caring For Special Babies & Children
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)

When Your Baby Dies

Why Our Baby? WHEN YOUR BABY DIES

If your baby dies before birth

You may find out from a scan, an examination or you may know yourself, that your baby has died within. But no matter how you find out, nothing can prepare you for the shock and the total disbelief of what is happening to you. The medical term applied to a situation when a baby dies while still in its mother’s womb is called an Intrauterine Death (I.U.D.).

Initially, a common reaction is to believe that there has been some mistake, that the monitors aren’t working properly, that the hospital staff aren’t reading them right, or that your baby is only holding its breath and is asleep. You are now in the difficult situation of having to begin the grieving process for a baby you have not yet met.

It is very natural to feel a degree of fear once your baby has died as to how she will look when delivered. Your baby is no longer the familiar, living, breathing bundle you had anticipated. A lot of mothers, on hearing that their baby has died within them, are afraid to carry their baby for any length of time for fear that doing so may harm them. Discuss the options with the doctor and your partner and decide how you would like the remainder of the pregnancy and birth to be managed. You may like to find out the sex of your baby and give her a name. This will help you bond with your baby before delivery. The care team will be guided by your wishes for the birth of your baby; therefore, it is important to discuss these with your doctor/midwife so that your wishes are respected. For example, you may wish to spend time alone with your baby, you may wish to take photographs or record other memories of your baby such as hand and foot prints.

The National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death will help you understand the range of resources available to you during all pregnancy loss situations, from early pregnancy loss to perinatal death, as well as when there is a diagnosis of fetal anomaly that will be life-limiting or may be fatal (HSE, 2016). These standards can be consulted here: https://www.hse.ie/eng/services/list/3/maternity/bereavement-care/national-standards-for-bereavement-care-following-pregnancy-loss-and-perinatal-death.pdf.

The Coroner has to be informed about all infant deaths now – Coroner’s Act 1962-2019 (rules of law). Where cause is known i.e prenatal diagnosis has confirmed T13 or T18 – then cause of death is known and very unlikely Coroner would direct investigation. Sometimes parents might still chose to want to know more about why their baby dies and would chose to have a PM examination anyway. All this information should be available to them and explained by HCPS / bereavement team in the hospital.

If your baby has died before birth, you may like to obtain a Stillbirth Certificate. Any parent of a baby born who weighs 500 grams (1lb 1.60ozs) or more, or having a gestational age of 24 weeks or more, is entitled to register the birth. All births including stillbirths are notified by the hospital. A medical certificate signed by doctors. Parents can then seek registration. Contact the local Registrar of Births, Deaths and Marriages, who is also the Registrar of Stillbirths.

Capturing memories of the short time with your baby can be very comforting for you when you return home. Voluntary organisations such as Féileacáin provide precious memory boxes including a hand-knitted blanket, two teddies, a candle, a finger/foot printing kit and a small jar of balm as a way for you to create some memories, which you can then take home and treasure forever. Equally, organisations such as Now I Lay Me Down to Sleep and its affiliated photographers and volunteers provide a precious service to grieving families – the gift of professional portraits (https://www.nowilaymedowntosleep.org/2019/03/14/nilmdtsinireland/” https://www.nowilaymedowntosleep.org/2019/03/14/nilmdtsinireland/).

In addition, Féileacáin have provided each maternity unit with at least one cuddle cot. These cots, which look like a conventional Moses basket, regulate the baby’s temperature, which allows parents to keep their baby with them that little bit longer (https://feileacain.ie/remembering/feileacain-memory-box/). The Cuddle Cots can extend the precious moments that parents can spend with their baby or allow them to take their baby home if that is what they wish to do.

If your baby dies at birth

If you didn’t know the extent of your baby’s condition prior to delivery, your feelings on being told of your baby’s death will be of shock and disbelief. If you were aware of her condition, you will feel disappointed that she has not survived the delivery. You will probably have had plans for her to spend time with the family.

If your baby dies shortly after birth

If your baby dies within hours or days of life, the hospital is the only home she will have known. However, you may have had the privilege of being with her at the time of her death. You may have built up a relationship with the medical and nursing staff. They will have become quite involved with you and your baby and will experience their own grief and disappointment when she dies. They may welcome a signal from you that you wish to talk.

 Even when your baby dies, your body will experience the normal post-natal symptoms such as your breasts starting to produce milk. If you find the symptoms particularly difficult, discuss the situation with your obstetrician and he/she can discuss medication  to alleviate them. 

If your baby dies at home

In deciding to take your baby home, you are aware that she may die at home. Despite the fact that the possibility is there, it is difficult to predict how and when your baby will die and how you and your family will react. Some parents may feel helpless. In this case, the ONS for palliative care, doctor and cleric should be called for support. Some parents may feel contented and happy that their baby died in their home environment and they may wish to remain alone with their child for a while before calling anyone. It may be the last time they can be alone with their baby, as the next couple of days are likely to be spent surrounded by family and friends. At some point, however, it will be necessary to call a doctor. He or she needs to certify the death of your baby.

If you have been caring for, or helping care for your baby for some time, the final end may be extremely difficult, especially if she has been ill for some time. But nothing can really prepare you for the death. The grief that is experienced is often different and deeper than was anticipated.

 

You may like to read Chapter 10 “A Double Sorrow”. 

KEEPSAKES

Do keep some of the following as reminders of your baby:

  • Photographs of your baby by herself and with family members. This is important even if your baby has died before birth. 
  • Your baby’s hospital identification bracelet.
  • A copy of any scan photographs.
  • The weight and other measurements of your baby.
  • A stillbirth certificate, birth certificate, baptismal certificate if applicable, death certificate.
  • Cot card.
  • A lock of hair.
  • A hand print and/ or foot print.
  • A blanket or special outfit.
  • You may like to capture videos.

 

 

  To the Child in My Heart 

O precious, tiny, sweet little one

 

You will always be to me

 So perfect, pure, and innocent

Just as you were meant to be.

 

We dreamed of you and of your life

And all that it would be

We waited and longed for you to come

 And join our family.

 

We never had the chance to play,

To laugh, to rock, to wiggle.

We long to hold you, touch you now

 And listen to you giggle.

 

I’ll always be your mother.

He’Il always be your dad.

You will always be our child,

The child that we had-

 

 

But now yo ‘re gone … but yet you ‘re here.

We’ll sense you everywhere.

You are our sorrow and our joy.

There’s love in every tear,

 

Just know our love goes deep and strong.

We’ll forget you never—

The child we had, but never had,

And yet will have forever.

 

C.P.

                                                

POSTMORTEM

A post mortem is a careful examination of the internal tissue and organs of the baby. This procedure is carried out at the hospital by a pathologist. You will need to sign a form granting your permission but you have the right to say no to a post mortem. If the hospital personnel do not suggest a post mortem, you also have the right to request one. The thought of a post mortem often evokes fear and distress in parents, but it has been found to be a source of reassurance to them in the future. Most parents feel better if they know where the baby is being taken for the post mortem, so don’t be afraid to ask. Also on the day of the post mortem, you may not be able to visit your baby. If this concerns you, be sure to come to an agreeable arrangement with the hospital.

 

The usual reported causes of death are:

  • Cardiac failure.
  • Respiratory failure.
  • Failure to recover from an apnoeic spell or seizure.
  • Pneumonia.

The preliminary results of the post mortem will be available within a day or two. The final report may take up to six weeks. Many parents find it helpful to discuss the post mortem findings with their own family doctor or paediatrician. Many hospitals make an appointment for you to come back to discuss the findings.

 

FUNERAL ARRANGEMENTS

If your baby has died in hospital, support and advice will be available from the chaplain and the hospital staff. However, if your baby dies at home, this advice can be sought from your doctor or cleric. It is important at this stage not to rush the arrangements. Consider involving your children, extended family, friends and neighbours, in the service.

 

Some details you will need to consider:

 

  • Burial or cremation (Check if there will be ashes from your baby’s cremation).
  • Using existing family grave (Note that sometimes parents who have buried their baby with their grandparents or other relatives later regret this decision).
  • Purchasing a new grave.
  • Undertaker services to open a grave.
  • Church service or private home service.
  • Newspaper notices (You may like to write something more unusual than the standard type entry).
  • Mum and Dad could put whatever they like in the coffin e.g. a photo, a toy, write a letter or card etc.
  • Use the family car – ask a family member to drive Mum, Dad and Baby. Dad and/or Mum take the baby to the car and from the car to the church and/ or grave.
  • Flowers.
  • Music.
  • Family meal afterwards.

 

 Due to the design of some cremators and careful slow techniques, they are able to give ALL the residual ashes from the cremation of either a miscarriage/still birth/t.o.p.(termination of pregnancy) back to a family. This affords bereaved families some closure to their loss.