Grieving the loss of the 'Perfect Child'. When a child is born with an impairment or long-term illness

If you are a couple reading my blog going through loss of any kind, I am deeply sorry for your loss.

So many of us and almost all parents-to-be dream of a healthy pregnancy and healthy child. Birth as we all know is an event, and sometimes things can either by accident, unknown or known to us go the other way. How do we recover or live with it? How do we proceed from the grief of bringing an impaired child home or not bringing a baby home at all?

Mothers deserve to be nurtured, cared for and listened to, whether they're birthing a full-term, healthy baby , Sick/Impaired baby or a baby who isn't going to live.  It is hard to be a parent and not be able to fix a problem with or for your child. It is hard to feel helpless in situations that are not in our control as much as we understand they are not

GRIEF is not only about death. We grieve the loss of our expectations. We grieve the loss of our dreams. The role of a doula is to provide assistance to a mother during childbirth. We are trained to offer support during labor and birth and some of us are also trained and certified to assist a mother during her postpartum recovery period, taking on the task of “mothering the mother.” But what happens if all circumstances change, those that we can control and those we cannot? Who is there for the mothers who ends up bringing  home a very ill or impaired baby ? Who is there to support mothers who do not bring a baby home from the hospital at all?  Who is there to mother the mother during the heart-wrenching experience of Birth traumas resulting to injuries to the child leading to impairements, stillbirth or infant loss?

This is part of the reason i decided to train as a Bereavement Doula. To support couples through ALL eventualities of pregnancy. I am still in training but as a mother who has gone through different kinds of loss, I thought to reach out for anyone who feels or is alone going through something similar. It is one thing being able to pick yourself up and learn from experience, but it is a completely different scenario when babies are born not how we envisaged they will be born.  It is one thing having someone hold your hand at the moment the child presented to you differs from the one you imagined they would be. It is completely different when the child presented to you is not one you will watch grow and it is completely different to have someone embrace you, hold your space when you are presented with a child you will not take home. That moment is the toughest  for any couple and  how that moment begins can have  profound impact in how you proceeed as a person, as parents, as a couple and as a family at large

The number one importance is to remember that with all the events i have mentioned, 'hello' before you can say goodbye is VITAL. I am speaking as a parent of a child who was born with an impairement following a normal pregnancy that ended with an injury. All my scans and antenatal visits were completely normal. In fact, this child was bigger in size compared to my first and everything was looking wonderful. An incident happened just before his birth that turned our world as a family upside down, and i remember not feeling alone because my mother was that person who recognised what happened in time , stepped in and nurtured me in a way that i am stunned even now how she did it. If i remember her words, she said 'let go of the child you were expecting, and accept 'this' child for he needs his mother now.  Not only was it so comforting and i didn't have to bear the realisation alone, It was like an awakening moment and a realisation too at how thin the line truly ls between welcoming life and saying goodbye at the same time, and how precious life is in general. At that moment i had to let go of my expectations, at my most vulnerable moment, i had to let go of the child i had envisioned and embrace the child before me. I have never been faced with such a tormenting scene my whole life.  i wailed for i was shocked, disappointment, I was afraid, hurt. Past that moment, I have loved him more than my own life

After a mother loses a pregnancy, after she gives birth to an impaired child or gives birth to a stillborn baby, she is changed forever. She will hold on to the grief  of 'what it could have been', 'what it should have been' 'why my child and why us as a family' for a very long time.  It is important for her support network to recognise this and offer as much support as they can. Seek the support of a Bereavement Doula too if you can. Birth of any kind even to a 'normal' child can be isolating. When a woman gives birth to a child with problems for example she will isolate herself for fear of not 'fitting in' with all the usual excitements  amongst other mothers. It is very normal to find yourself in a group of women 'bragging' about their children's developments and hit milestones, and feel isolated or not fitting. 

Bereavement doula-ing is not for everyone, and understandably some Doulas feel comfortable only in the joyful spaces of welcoming new life. The role of a Bereavement doula can be testing, it can be 'hefty'. It requires you to maintain control of your own emotions, at least in the mother's /Parents' presence.

Following my own experience i am confident that should i walk into a situation i found myself in 4 years ago, I would know what to say to you and how to support you. My Bereavement Support to families will be free when i certify.  In the Netherlands there are TWO of us certifying as Bereavement Doulas that i know of. My colleague is in Amsterdam. Please reach out if you would need me to bring you in contact with her for support in Amsterdam. I feel incredibly honored to hold space for couples during what may be a time of deep and unspeakable grief

A few things which helped me that I can share from my experience were

(1) CRY – sadness costs energy. I know this sounds harsh, but it is true. Cry it out, so you can lighten your soul. Believe me I wanted to crawl in a hole and stay there never to emerge again, but I had to learn to save my tears for when my child was in bed, for my sorrowful-self wasn’t going to do him any good.

(2) Be mindful of your energy – The energy around you is contagious as a mother. Your baby feeds from it. Hard as it may be, If your child survives, find closure or acceptance of some degree and bring back ‘normality’ as much as you can. You will be glad you did later on

(3) Be prepared - that sometimes the 'support' you will be offered may be temporary because truth be told, 'life goes on'. If you are lucky and have a great support network who will stick by you through it all, thank God for it

(4) Be prepared - that 'Compassion' is alien to some folk! Be prepared that even those close to you will NEVER  really understand your situation. They will make the situation 'theirs' in some ways, some will be too 'traumatized' and 'saddened' to hold the child, for it will 'affect them emotionally', they will diagnose your child for you, they will have many opinions over the situation and some will be plain NASTY too. I was told maybe its because i have a 'dirty' womb why my son is how he is.. 

(5) Make a moment for you – As a Doula I talk a lot about self-care to my clients. In this mode, it is so important to find a moment for yourself where you can breathe, worry without being interrupted, cry out, maybe with a friend to lend a shoulder. You cannot measure grief, the sadness will always pop up with the missed milestones, when they delay talking, when you see them struggle to achieve the things we take for granted, when you see how different they may be amongst their peers, but you can within yourself find that strength to continue and appreciate the little steps you take together because it is a long journey and it is NOT an easy one

(6) Ask, ask and ask again – At this moment when your head is racing, your emotions are sky high, it is very easy to overhear and comprehend things the complete opposite. Write down your questions as they stream into your mind, and if you are meeting the team of specialties because once you leave their building, getting hold of them so easily again is normally close to murder. Your moment to jump on questions and looking for answers is when they are still around you and in your case

(7) Be sure that all resources available to you are for your specific need – Research your case and try to be ahead with your team of Drs. Of course we aren’t all medical trained and some resources are not readily available to us, but be sure not to stick with only what is suggested to you. Read on similar cases, reach out to others in your shoe, there is tonnes of information online these days

(8) Listen to your gut feeling – If what you have trial of x amount of months hasn’t yielded results, maybe it’s time to ask for a second opinion. Be assertive to voice your concerns and ask for re-valuations etc. You probably couldn't control what happened to be in the situation you're in, but you can have control over the future now, by being observant, determined and proactive in the best interest and the life of your child