My Silent Struggle : Neonatal Death

Article previously published on Solaceuk.org

“Your little ones are the helpers of Paradise. They will meet their parents and grab them by their garments or their hands to no end other than that Allah will enter them into Paradise” (Sahih Muslim).

Time. They say it heals all wounds, they don’t tell you about the invisible scars that forever remain as a reminder of your pain. I live my life now counting days, months and years. My love and sorrow have now been converted into important numbers and dates. Let me break it down for you.

I am the mother of 2 children. My son would be 13 years old this year. He was born Muslim while I was still lost in misguidance. I was 18 years old when I pushed him out into this world; 4 months before he was due, 60 seconds of breath before the consultant called out his time of death – “3:51am”. 3 days spent in a hospital room with my son’s body in my arms praying for his soul to return. I walked out of the hospital with a vacant womb, empty arms and a heart as cold as ice.

I am the mother of 2 children. My daughter would be 4 years old this year. I was 26 years old, 4 years had passed since I uttered the testification of faith and entered Islam. I patiently waited 8 years for the blessing of a 2nd chance at motherhood. The 6-month mark arrived, excited to find out the gender instead I was informed of impending doom, a rare disease that “1 in 3000 babies suffer from” they said. “No cure and highly likely she will die at birth” they said. At 8 months the labour pains ensued, hope and fear was the energy in the room as my stomach was cut open and my 2nd chance was pulled from my cocoon. 3 weeks in the NICU, sleepless nights, early mornings countless visits and prayers later, blurry eyed I watched her father place her body wrapped in white shrouds, into the earth of the Gardens of Peace.

The Struggle Is Silent, But Real

“O Allah make me a source of mercy to others, ease for me my sorrow in the remembrance of those who also suffer. Open my heart to the plight of others.”

Imagine going to the registry office to pick up your child’s birth certificate and death certificate at the same time. Can you imagine the feeling? It is so overwhelming and heavy I could not even begin to describe it, this is a feeling that can only be felt to be understood.

When an adult or an older child passes away everyone trades good memories, funny stories or anecdotes about the beloved. Social media memorial posts are made with the comments section filled with duas and “ameens”. The bitter sweet gestures bring comfort to those who grieve.

Neonatal death is the death of a child within the first 28 days of birth. The grief process is different when it is applied to the death of a child who did not live long on this earth.

Loved ones and to a lesser degree, your husband does not have the same level of attachment to your baby as you did. Some people may have never experienced the loss of a child. This can lead them to feel awkward and unsure of what to say, so they say nothing, no Facebook posts or anecdotal memories – just radio silence.

Anyone who has ever experienced the miracle of life growing from within, knows how instant that bond begins to form. Anyone who has ever been a human incubator understands that the connection is not only physical but spiritual, your heart strings are literally connected to this new sprouting life, so when that life, your plans, and your dreams are taken back by the one who blessed you with it in the first place your silent struggle begins.

What follows is just a snapshot of some of the situations a childless mother will almost certainly experience.

Things People Do & Say

“My Lord, I know my child was a trust from you, what a great and eternal blessing you gave me.”

Oftentimes, well-intentioned friends and family may say or do things they feel will comfort you, but that in fact, exacerbate your pain making you feel worse, rather than bringing you the intended solace.

Removing all reminders of your child

I remember when I returned from the hospital after my son had died. I walked into my bedroom to find no trace a baby was ever supposed to return with me. All the baby items and gifts had been cleared out by my family to lessen the impact of the tragedy. That was the worst thing they could have done! I felt the rumblings of rage rising inside my rib cage. In a measured tone I demanded that everything be put back exactly as it was. See, for me to get through my grief I need to be reminded of it, I need to feel my heart breaking, I need to sit in the anguish in order to accept it.

Everyone is different, with varying coping mechanisms, so how were my family to know? The best course of action is to let your loved one lead. Don’t make decisions on their behalf of what you think is best. When your child dies you feel as though you have no control, you feel powerless, so someone making decisions for you just magnifies that fact. Simply let your loved one know you are there for them and ask them: “What do you need me to do?”

“You are so strong, I could never deal with this.”

I would constantly hear this phrase and still do. This is a compliment but when your child has just died in your arms you feel anything but strong. These words make it seem as though you have some special power that is allowing you to get through the day. I am no stronger than anyone else, in fact when I am alone, I break down and cry to the point I scare myself because the sorrow is so deep.

“Allah will bless you with another child Insha’Allah.”

In the first waves of grief this statement felt like a physical blow to my already damaged heart. It’s a sweet sentiment but I didn’t know how to react to it. I stared vacantly at them trying to comprehend why they would utter those words so soon. I wanted to scream, “I don’t want another baby I want my baby!” After having gone through almost 9 months of pregnancy, and 3 weeks tending to the needs of my new born; she was not just ‘another’ baby, she was my child with a unique personality whom I had built a relationship with, whom I held as her heart came to a stop.

No one or nothing will ever be a consolation for a lost child. If you have ever said those words to someone who has just lost a child, they may have remained silent even mumbled a ‘thanks’ but believe me, it cut the wound deeper. In retrospect it’s clear that you are only trying to provide hope yet be mindful of the words you use.

People have often said to me: “I just don’t know what to say” I tell them, nothing you say will make that mother feel any better in those early days so don’t try so hard with what you say. Concentrate more on what you do. Simply acknowledge the loss. Saying “I’m so sorry” is enough. A long warm hug is enough. A squeeze of the hand as you sit in silence is enough. A text to say “I’m thinking of you, you’re in my duas” is enough.

Baby, Baby, Baby

“Whoever Allah takes is His and whatever He gives is His and to all things He has appointed a time so have patience and be rewarded” (Sahih Bukhari).

I see my children in the faces of every child that crosses my path, I hear my children every time I hear the laughter of children. When a baby cries, I feel anxiety I might have felt if my children were unwell. There are triggers to my pain everywhere, there is no getting away from new born babies or children.

With both of my pregnancies I was pregnant at the same time as some of my closest friends and family members who went on to have healthy children mashaa Allah. When I’m told “she took her first step” or “she’s teething now” my first thought is, my daughter would be doing that. Even years later when a friend said: “my son’s going into year eight, 13 already” On the outside I smiled and said: “oh wow, how time flies!

It is a constant battle to balance the delight and dejection I feel when I am scrolling on Facebook or Instagram and see the “I’m having a baby post” the “Bump journey post” or the picture of a hand holding a baby’s foot saying “we had a healthy baby girl”. Of course, I am happy for them, but I can’t shake the feelings of disillusion. There are times I don’t realise it has affected me until I find that I am feeling blue and spending an unhealthy amount of time in bed. I think back and realise this gloomy disposition started at the announcement of a pregnancy.

I had a close friend who would send me pictures of cute new born babies, every time she did, I would text back, “Aww cute, mashaa Allah” but it would ruin my whole day. I have other friends who have toddlers and whenever we meet up the topic will naturally turn to mummy talk. I have found that this has made me want to spend less time with these friends as I don’t want to stop them from talking about their experiences but at the same time there are days when I’m unable to emotionally handle it.

These experiences live with you daily no matter how much time goes by. You are constantly trying to manage other people’s expectation that you have dealt with your grief. You now forever walk through this world wearing a mask; so as not to dampen the joy of others. By no means does that mean that everyone should keep the joyous news of a new arrival to their family a secret, or never speak about their children so as not to hurt someone who has lost a child. However, be conscious of who you are speaking to and the pain they may be feeling. Allow your loved one to be open and honest; don’t be offended if they turn down an invitation to a baby related event, change the topic or seem disinterested when you are speaking about your children.

Do you have children?

“The prophet reports a dream in which he saw a flourishing green garden with a huge tree. Near its root was sitting an old man with some children. He was told in this blessed dream that the old man was the Prophet Ibrahim and the children were the (deceased) offspring of the people” (Sahih Bukhari).

Whenever I start a new job or meet new people the question that always catches me off guard is: “So, do you have children?” The angst I feel when I’m asked this question is undeniable. A simple enough question for most, for me those four words are entrenched in memories, sadness, frustration and inadequacy.

In that moment time seems to slow down as I consider what my answer should be.

Do I say “no”, well that would be a lie and I would feel as though I am denying my children. Do I say “yes”, If I do then the follow up will be: “Oh really, how many? Boy or girl?”

Do I just be honest and say, “no living children”, well that will lead to an awkward pause, the inevitable gasp and “Oh no, I’m so sorry” followed by another awkward silence.

There have been other times when I am in a circle of sisters who are talking about some aspect of childbirth, I may contribute to the conversation without thinking which brings on “oh wow, I didn’t know you had children” and there again comes that “awkward” dilemma.

In truth, I do a variety of all the above depending on the circumstance and atmosphere. It has never gotten any easier and I don’t think it ever will unless Allah blesses me with children and my answer can simply be “yes” without the caveat. (In shaa Allah)

On the flip side, one thing I can say that has helped me throughout this journey is my family and friends have never forgotten my children especially my daughter whom many of them brought gifts for, met, took pictures with and prayed for in the short time she was here. No one is ever hesitant to mention her name with joy and a smile. The fact that she is a recognised member of my family makes me grateful for the 3 days and 3 weeks I was blessed to spend with my children.

Yes, the struggle is silent but ultimately it is worth it. Every parent’s hope and prayer are that their children make it from this life into Jannah. I have 100% knowledge that my son and my daughter are in Jannah, laughing and playing in a beautiful green garden with all the other children of childless mothers. They are being well looked after by the Prophet Ibrahim the father of the prophets. On Yawm-ul- Qiyaamah, I have two people whom Allah has allowed to be intercessors for me and plead on my behalf.

My children are still my motivation even though they are not with me because I am striving hard so that I can make my way to Jannah where we will all be reunited. What a day that would be.

“Death cannot end our bond of love. One day the veils will lift, the separation will cease,

and we will be together forever.

Peace until we meet again.”

All Ahaadith and duaas were taken from a book Shalisha was given by Gardens of Peace called: A Gift For The Bereaved Parent by Zamir Hussain.

Article previously published on Solaceuk.orgPhoto credit: insung yoon

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