Category: Neonatal Loss story

Pregnancy Infant Loss Awareness month is drawing to a close this week. The awareness for the wider community may lessen – unless they are directly affected by the loss of an infant or pregnancy – but it won’t stop these deaths from happening. It was never about that.

Everyone knows, though for some it is so wretchedly new that it’s too difficult to accept, that death is a natural part of life. But when it happens at the beginning of a life, or before one has barely begun, the need for solid support is absolutely vital to safe healing of the parents. Without it,  the journey to the ‘New Normal’ can take much longer. And sometimes, never really ends.

I’m deeply honoured to introduce Nicky, a new blogger and a mum who is riding the incessant waves of grief and shock since her baby boy died just three months ago. It is easy to hear the natural optimism Nicky exudes when you read her blog, One Of Seventeen, which is shaping up to be a really engaging new space. Even the most optimistic of us can feel flat to the floor by the relentless pounding that comes with losing a child. That is where good friends – the real salt-of-the-earth good eggs! – come in blessedly handy.

In today’s post, Nicky highlights the huge importance of consistent normalcy mixed with lashings of gentle care. And chocolate. Please give her a warm and hearty welcome to Sunny Side Up and join me in a huge thank you to her for this uplifting take on loss.

Thank you, Nicky, for sharing this and all the very best to you  x

 

In just over 5 hours it will be 3 months exactly since my baby boy passed away in my arms.

To say the last 3 months has been a rollercoaster of emotion would be the understatement of the century!

But rather than focus on sadness today, I’ve been thinking of all the friends who have helped me since that horrible day when we came home from the hospital with empty arms.

Friends like Debbs, who has sent me a text every single day since he died. Often they just say “thinking of you” or “I love you”. Sometimes she describes her day and tells me of the funny things happening in her world. Sometimes, I’m lying in bed thinking I don’t want to carry on with my life as the pain is simply too much to carry. Sometimes, I wish I’d died with him in that operating theatre.

It would be easier.

Then “PING”. It’s a Debbs text. I read it, I get out of bed, I hug my boys and I start living my day.

Friends like Helen, who built me a Jenga tower out of biscuits, just to make me smile.

Friends like my Vixy, who has opened her arms & her house to me regardless of time of day or any other plans she has.

She’ll text “what you doing Nixy?” ”Bad, bad night” I reply. “Come” she says. “But its 8.30! You don’t want woe is me now” I protest. “Just come”, she says. I do. We are both in our PJs in her busy kitchen. I’m a mess. She makes me coffee while giving her beautiful kiddies breakfast. We just look at each other and I know she gets it. “I wish it could be different for you my love” she says. “Me too” I say.

Friends like my sweetheart Rekha, who has debated fate, life, what it all means with me over hot chocolate in her kitchen, way beyond bedtime, even though she has to get up early for work the next morning.

I could go on. There are many more examples but I can’t list them all. I’m so lucky, because lots of wonderful friends have gone above & beyond for me during what has been the most heartbreaking time of my life. I’ve really needed them & for the most part, they have come up trumps. Super trumps!

How do I ever thank them? I don’t know. I probably haven’t said it enough, consumed as I am by grief. So here I am, now, today, saying THANK YOU to all my friends who have comforted me and supported me. I love them all and one day this WILL be easier and we WILL go dancing.

 

 

Do you have a story to share? Submit yours here.  

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.

– Dr. Elisabeth Kubler-Ross

 

 

Today, I feel most privileged to share a submission from a reader named Dani, who has selflessly offered a little of her journey with her son, Jasper. Please join me in welcoming Dani and show her you have read by leaving a comment below if you are able.

To properly convey her thoughts and emotions, she has also included a poem she penned at the time which illustrates beautifully – painfully – how she was feeling, inside and out, at the time. Dani says, “I understand so many out there cannot find the words and I hope mine can help.”

I am certain they do help, Dani. Thank you so much for sharing this.

I loved him dearly
More and more every second he was with me
I held him so gently
Then tears began to pour
Because I knew by the end of the day
I wouldn’t have him anymore.
In tears I saw him sinking,
I watched him fade away.
He suffered much in silence,
He fought so hard to stay.

He faced his task with courage.
His spirit did not bend,
And still he kept on fighting
Until the very end.

God saw him getting tired
When a cure was not to be.
So he put his arms around you
And whispered, “Come to me”.

So when I saw him sleeping
So peaceful, free from pain,
I could not wish him back to suffer that again.

But I’d have done anything to keep him out of harm’s way
But that didn’t stop God’s will-
I still lost my baby that day.

In my arms he died
So for weeks I cried.
I couldn’t understand what was on God’s mind
How could he do this,
It was so unkind-
To take my baby before his time.

I’d have given him my every breath
I would’ve given God every beat from my heart
I’d have ripped it right out of my chest
Just so he wouldn’t take leave us apart.

 

At 23 weeks I was diagnosed with Pre-ruptured membranes. I was in and out of the hospital for weeks until the 18th of November, 2009. I endured needles, magnesium drips and adrenaline shots. I was on constant medication to prevent any kind of illnesses. I had to take my temperature 5 times a day to make sure it remained constant.

On November 18, I woke up in pain. A few hours later the pains were worse than before. We headed towards the hospital. I was moved into a birthing suite where the pains got worse and worse. The monitor on my belly was telling us that the baby’s heart beat was breaking 200 beats a minute.

At about 9am the surgeon came in and told us that the only way Jasper was going to have a chance was if we delivered the baby now via emergency c- section, I was in the surgery by 9.15am and the baby was out and born at 9.31am. To our shock and amazement it was a boy: Jasper Rhys Hall (four separate ultrasound tech’s told us it was a girl ). They got him breathing and then rushed him to the Neonatal Intensive Care Unit (NICU). An hour later we went to see him.

Jasper was in an incubation chamber, with lots of tubes going in and out of him and a machine making him shake to help him breath. He was red in colour due to the bruising because he had refused to come out into the cold.

Later that afternoon around 6pm, we left my hospital room to go down and see him. We were greeted at the door by two solemn nurses and a very serious doctor. Basically, they told us that he wasn’t taking oxygen any more and his oxygen stat’s were dropping and that we had to make a decision, as he had a very very slim chance at recovering his oxygen levels. But as he had been with so little for such a long period of time, there was a very high chance he would be severely brain damaged. Our choices were to either let him live and see if he would pull through, or we could pull the plug and let him slip gently away surrounded by those who cared for him.

We decided that it was best to just let Jasper go. As my husband went into the waiting room to get his family, it fully dawned on me that we were losing our son. By the time my husband came back, I had organized for Jasper to be baptized and a priest was on his way down. He was baptized while still in his incubation chamber. Then the rest of the family turned up to say their farewells.

Jasper was taken out of his incubation chamber and laid on a bed with me and my husband. Everyone said their goodbyes. Then as his machine was turned off, he went still. The doctor pronounced him at 7.32pm on the 18th of November 2009. We said our final goodbyes a mere 10 hours after first meeting our little man.

Post-script: Dani says, “I would love to mention that the doctors did find a reason for my loss. I now have a happy, healthy little 4 month old named Harrison.”

Do you have your own story you’d like to share? Please feel free to add yours here. You can also read more shared stories here.

October is Pregnancy & Infant Loss Awareness month
While care and consideration is especially important in the first weeks, months and even several years
after a loss such as Dani’s, the acknowledgement of the long-reaching impact of such a loss
is so important for all who have lost a child.
~Lest we forget~
Although they could not stay, these tiny lives were here
and they’ve made their mark forever on their parents and loved ones.
Please be mindful of the hearts and memories you move amongst, always.
You just never know who has been touched in this way nor where they are in their own inner personal journey of recovery.
x

 

 

I remember a time, about seven years ago now, when Cindy sent me an email about a dream she had the night before. We had emailed each other almost daily for nearly a year in between meeting up again and becoming pregnant at virtually the same time. In this email, she wrote:

“I just had to write to you and tell you about the dream I had last night.  I dreamed that you and I were riding a beautiful bay horse together!  I hopped on first in the saddle and then I helped you to get up and we rode double! We went to a supermarket – as you do – and while I shopped you took the horse outside and gave all the little kiddies pony rides!!”

Little did we know, but the pregnancy with her baby boy was just around the corner. My little Lolly was soon to follow. A month after Kayne was born, I gave birth to the LGBB. I held Cindy’s boy for the first time and rested him on my 34-week bump. I almost swooned. I could not, would not, believe it was true. They are our special babes, our only surviving children. Healers and feelers, deep thinkers and joyous imps, they both are.

Here is Part 2 of Tiana’s story, as told by her mum, Cindy. If you need to catch up with Part 1 first, please read it here.

 

 

I was taken back to my room to my mum and sister, who had already been told before I even went in for the c/section that something was wrong.  Our little baby girl was rigid and had constricted joints, so she was never going to be a natural birth.  She was taken to Monash at 3am that morning, I would follow the next day.  At this point we still had no idea what was wrong – no one did, not even the experts. 

When I arrived at the Monash we went to see our darling in Bay 8 of the NICU. We were distraught, scared, overwhelmed. Our emotions were running riot.  But still no answers. Our baby was on morphine and muscle relaxant medication.  She was not aware of anything. She was in her own little world, hopefully one with no pain. 

All the experts paid Tiana visits. They ran tests, eliminating certain things like genetics and so forth.  Her internal organs were all fine, she had a little blood on the brain from the resuscitation but nothing that affected her brain function. The problem was she was not going to breathe on her own. She showed no signs of wanting to. They believed that her joints had been constricted for some time, as the bones had fused a little in some places. She also had a hip displacement. 

We were on a roller coaster ride that would last six days. One moment gave us hope and in the next, we saw the reality for what it was. It was our doctor who finally gave us the truth when we went to see him. He told us that he did not think she would survive.  In the meantime, the tests just kept dragging on until we had the most wonderful nurse start taking care of Tiana. She was very upfront with us about her progress. They were trying to wean her off some medication but as soon as they did, she started having little seizures.

This is when we stepped in. No way was she going to experience pain. Why, we thought, when she never had the joy of experiencing pleasure? How cruel would this be?

We simply had to protect our baby and not be selfish!!!  

So a meeting was called for Friday 13th at 12 noon to discuss our baby’s future. My husband and I went there with our mothers. It was agreed that Tiana was not going to breathe on her own and they saw no solution to her problems. So it was agreed that she would come off life support at 4pm that afternoon.  We left them for two hours while they performed a couple of final tests. We told her how much we loved her and that we would be back to set her free at 4pm.

We cried our tears on her and left. 

At 2.30 that afternoon we were called to come back quickly as she had started changing colour; Tiana was showing signs of giving up on her own. I recall the nurse telling us how these little fighters hold on because their parents are not ready to let them go. How strange, when just one hour earlier we had told Tiana we were going to set her free from this pain. Now  here she was, going on her own. What a special princess, she was letting us know that we had made the right decision, for it was what she wanted too. 

For the very first time, we got to hold her. We all passed her around while she was still on the ventilator, then she was handed to me to be taken off life support. I still remember that moment like it was yesterday, holding her like that. Her presence will always stay with me. Then her little eyes popped open as she moved on to a better place.

This was not her time here. She passed away at 3.55pm on Friday the 13th August – her due date! To this day, even after performing an autopsy, they do not know what happened to our baby. 

We have no answers at all, nothing.

How do you move on from this?  Such pain, such sadness, our future gone.  Well… you do, because you have to.  Tiana has given us so many gifts. She touched our lives even if it was for such a short time. We think of her everyday and kiss her photos every night before bed. We were blessed, we know that. I would love to have seen her grow, have been able to hold her more, nurture her, but it was not to be. 

So we go on. Each date, day, month, year discussing what she would have been like, how old she would have been, just remembering and honoring our little Angel… Tiana.

The future held a few more miscarriages, but it held a great gift also. We went on to have the most adorable, loving and beautiful son, Kayne, in 2006. He is the light of our lives, and together with him, we keep our darling Tiana’s memory alive every day.

 

This story had to be shared today. To commemorate the birth day of the firstborn daughter of a gorgeous, big-hearted friend of mine.

In the beginning, Cindy was the girl I looked up to. Although I was a bit of a naive 18 year-old and she was several years older, I could sense she was a person who was decent and kind, generous and fun. We clubbed and pubbed together – she was a friend of someone I knew – and we really enjoyed one anothers’ company in the mid 1990′s.

There was nothing major about us losing touch. Because we were friends of a mutual acquaintance, the link was a tenuous one. But it’s the story of us reconnecting that is poignant. We did not cross paths from the time I saw her at my engagement party with Steve in 1997, until the day I happened to chance across a post she had made on a large forum of a parenting website – what were the chances, as if by some Universal fluke (and regular readers will know I don’t really believe in those…. everything is meticulously, beautifully orchestrated) – and, agog, we agreed to meet in a café sometime in late 2004.

That day we saw each other again, pounds heavier from having recently given birth (and with painfully heavy empty arms) is one I will always remember. It sealed our fate as firm confidantes, whatever the future may bring. We should have had prams overflowing with pink throws. We should have been sharing the joys and heartaches at being kept awake nights by our newborn daughters.

Instead, we reconnected over the fact that both of our precious babes had died in the same NICU in the same Melbourne hospital.

It is my deep honour to introduce you to Cindy, her husband Darren and their baby girl, Tiana, aged 6 days. One half of the pair of girls lost in 2004 that determined we should be reunited.

Part 2 to follow.

 

At the start of 2003, my husband and I decided we would like to have a baby. Like everyone else we just assumed it was that easy – little did we know the path we were about to go down. 

We fell pregnant the first time within 6 months. Unfortunately, this pregnancy was not to be as we miscarried at 12 weeks. This was quite devastating. However, after the D&C we decided it was time to try again. Within two months we were pregnant and I can tell you, when we did the pregnancy test and it came back positive, there was not quite the enthusiasm there had been the first time. We were scared. Simple as that. So we made it to the ‘safe’ mark of 12 weeks and we relaxed from thereon in. We thought we were going all the way!!!

At the 20 week scan, everything was great, no problems at all. This was fantastic. I really had a very easy and enjoyable pregnancy. Our little angel was very active and I found my favorite time of the day was coming home from work and sitting on the couch. This was when she really became a gymnast. I had even said to my husband that this would be the one thing I would miss so much after she was born. I worked right up until two weeks before her due date (in August, Friday the 13th!).

At my 37 week check up the midwife realised that I had only had my 36 week check up with the midwives and not the Doctor and she arranged for me to see my Doctor at 38 weeks. So off I went to see my wonderful doctor. He was having a poke and a prod and decided that he could not feel her head, he assured me that, of course, she did have one! But we were sent off for an ultrasound as he was afraid she may be breech.

Obviously, we were extremely nervous heading off to the ultrasound, but all we were concerned about was that she may be breech and that at 38 weeks they would not be able to turn her. The thought of a breech birth or a c/section really didn’t sit well with me. Therefore, we were delighted when we where told she was not breech. Then came the BUT…..

“She is quite small and you have too much amniotic fluid”. 

Well. The panic started. We were then sent off to have two further ultrasounds back at their main consulting rooms. They advised that they thought she was about 5lb. But going back over the 20 week ultrasound they could see nothing that would alarm them to believing anything was wrong, that perhaps she was just a small baby?? We were told to go home and call our doctor after they had spoken to him, and see if he wanted me to go in and be induced. Our doctor was happy for us to continue the pregnancy.

We had international guests staying with us and we threw a party for them on Friday the 6th August. I went to head off to bed at 1.30am in the morning (I still don’t know how I stayed up that late!). When I went to the toilet before bed, my waters broke. What bad timing! I had a tipsy husband and a house full of people. Luckily, I had a designated driver available. 

I could not stop shaking and saying, “I am not ready for this.”

I wonder, why was I saying that? Did I know in my heart of hearts what was about to unfold?? 

We were told to go into the hospital for monitoring and we remained there for 2 hours before being sent home with pain killers and sleeping tablets which I was ordered to take. After sleeping for 2 hours while our phone kept ringing, we finally answered it. It was the hospital, telling us to come back to the hospital to be induced. Wow, did I go into a panic…….  Why early??? I needed more time!!

I was put on the drip at 10am. Labor came on pretty quick and strong. They checked me at 5pm and discovered that I had not dilated at all so I was left for another 5 hours and checked at 10pm. Again, they discovered I had not dilated at all.

It was decided that I was to have a c/section – my worst fear! I remember insisting that they give me a general anesthetic, which they talked me out of, thank goodness… So off we went.

I have to ask myself to this day why I did not have the anticipation and excitement of a mother about to see her baby for the first time.

Why was I not even slightly joyous? Did I know? 

At 11.29pm on Saturday 7th of August, our little angel, Tiana, was born weighing 5lb 2oz. When they held her up to show us, we knew something was terribly wrong. She did not cry and was whisked away for resuscitation. I kept yelling out, ‘What is wrong with our baby?’ All I could hear were comments fro them like, ‘It may be a genetic disorder’ and ‘The mother must not have felt much movement in the womb”. But I did. I did feel her.

They handed our little baby over to us and she lay by my side. She gave one glance toward me and one towards her Daddy. Had I been given a general anesthetic, I would never have seen our little doll open her eyes, for this was to be the first and last time we would see her beautiful loving eyes open.

 

Please check back next week when Cindy continues her heart-rending story here.

 

 

Today, I would like to introduce you to Neri.
I hope you will join me in giving her a warm welcome to Sunny Side Up and acknowledge her story by leaving a comment below.

During the process of working with Neri to bring this story to the blog today, I learned from her the importance of understanding, respecting and moving forward from the older generations’ teaching that to talk about such things as the loss of one’s baby was incorrect and actually ‘rude’. As Neri states, it was a given that they simply not mention the name of the sibling who was not with them in life. While this practice is not quite so strict any more, the effects of the forced silence are still felt in many families and, therefore, society today, generations later.

I also came away wondering how it might be, to live with the knowledge of a sibling having been born but never given an identity within the family. I am grateful I will never know, but I hope that some readers can draw strength from Neri’s sharing of her experience.

In Neri’s words, here is the story of how she was the loving catalyst that led to her parents opening up to each other for the first time  about losing their firstborn… 47 years later:

 

I was in my mid forties and living in Melbourne when I began going to psychotherapy to understand and unravel my stress levels and ill health, looking for further meaning.  At the time, I was working in Hospitality senior management. Sometimes I would struggle with my perceptions of how things should be, could be and, how they actually ‘were’ within my workplace. Through psychotherapy I began to become aware of my position in the family and the role it played in the way I went and felt about life. I was led to see that I was actually the second born child and not the first.

As a child, my family treated me as the first born. As I grew up I was, therefore, expected to be the more responsible one, in particular towards my three younger siblings. I became interested to find out more about my first born brother, Vincent, to see if it might shed some light on my situation, how I felt about my family experience and how that played out in life.

Then, one weekend, I found an article on “Mrs. Rose” while reading The Age newspaper. I noticed she had had a stillborn child some 30-40 years ago for whom she was never able to grieve. There was a photo with the article of “Mrs. Rose” finally standing beside a little grave weeping for the child she had never seen or held. The article was written about the work done by Sands, who were helping women/parents to grieve their lost stillborn children from long ago.

I immediately felt “Mrs. Rose’s” story had meaning for me. It helped me understand that my parents had probably never properly grieved their first son. Vincent had only lasted “a few short days”, in my mother’s words. These were the only words she had ever told me about my older brother. It was also accepted that one should never pursue any questions.

“Mrs. Rose’s” story caused me to be overcome with tears and unbelievable sadness. I don’t remember ever experiencing this much grief at someone else’s story before. Essentially, I knew this story highlighted deeper meaning for me. The grief I experienced felt bottomless in some ways. I wondered, ‘How sad can something be?’ and I gathered my thoughts about how I could share this story with my Mum and Dad. After all, I now had a newspaper cutting I could mail them to support my asking for more information surrounding Vincent’s death.

Eventually, I found the courage to write to my parents and included The Age’s newspaper article on Sands and “Mrs. Rose”. Having written and posted the letter to my mother asking for her story and reflections about her first born (and my older brother), there were then moments of hoping I wasn’t expecting too much from her. After all, she was now nearing 70 years of age. Adding to this, having had ‘nervous breakdowns’ at various times in her life, she was not always able cope very well mentally or emotionally with sensitive or emotional issues.

Knowing that my Mum always wrote every week (and did so whenever I lived away from the area, which was much of my adult life), I wasn’t expecting that two weeks would go by without hearing from her. When her letter did arrive, I wasn’t ready for what she wrote.

Through flowing tears, I slowly began to see the story behind the sadness. The grief both my parents must have felt at the time of their first born not surviving, then not even being able to acknowledge this with each other. It would have impacted upon them more than I was aware of. Not having given time to grieve would have affected their subsequent lives on many levels, as well as my own experience growing up, not to mention my younger siblings.

I was hugely relieved that I had had a response from Mum and Dad. It left me feeling that in some way I had found some of the answers to the questions I had about Vincent. I had also been given an understanding from behind all the “closed doors” that had previously shut the mentioning of my brother away.

There remain questions unanswered for me, as it was never easy to open the closed doors in my family. But it was enough for me to gain a sense of the truth that belonged to Vincent, allowing him to become ‘alive’ for me to know. He is and will ever be with me in my heart and I know now that we were a family of five children and not four.

I am forever grateful to that article in the Age about “Mrs. Rose” and Sands. It helped to open a doorway ever so slightly, releasing some of the grief surrounding my elder brother’s life, which in turn has brought healing for me and an adjustment to many of my patterns in life.

On reflection, this may have been the real catalyst that took me out of the Hospitality trade and into the world of Healing Arts of Reflexology and Energetic Healing. A world less stressful for me.

 

Letter from My Mother dated Saturday 18th Jan., 1994Dear Nerida,Many thanks for your letter and enclosed sensitive article. We were both affected by it and for the first time in 47 years, through tears, were able to talk of the event.Could it be the passage of time or shock which has caused Dad to be unable to recall the details? He could not remember Gran and Aunty being with us. Vividly he does remember the doctor telling him to go home and have a good night’s sleep – that all was well, only to find out the next day, that was not so. Dad never did see his first son.

When it became apparent that Vincent would not be long with us, I asked to see him and was given a fleeting glance of a well wrapped bundle held by a nurse who paused briefly in the doorway of my room. No touch, just left with empty arms.

The only comfort was the knowledge that Vincent was baptized and respectively buried thanks to Grand dad and Grand mum (your father’s parents). They made available the burial plot which they had purchased previously; an Irish custom which to me, the uninitiated, found abhorrent, but was later to appreciate.

Later Dad and I visited the grave of Vincent together and I planted snowdrops – whether they grew, I do not know as we only visited the day Grand Dad was buried, one July, and too early to see Spring growth.

It was not the “done” thing to talk of such matters in those days, but each was aware that the other was grieving. Life had to go on and can you imagine the panic which swept over me, eleven months later, when I was told you would be born, feet first! By the grace of God you were given to us, alive and well.

Is it any wonder, then, that you have always, and will always be, very special to us.

I can understand the feelings of “Mrs. Rose” and all others like her, for so many times over the years my thoughts have gone to that little grave, so far away.

Take care. Keep warm. Love & God bless.

Mum

 

Neri, I want to thank you for sharing your story so honestly and your courage in exploring this so deeply for us to learn from. It is a privilege to introduce your brother and your parents’ heart rending journey here today.

Much love to you. x

 

 

 

Do you have a story to share? You can submit your story here or contact me by email.

 


Follow

Get every new post delivered to your Inbox

Join other followers