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Support for Dads

Support for Dads

SOFT UK recognises that the whole family needs support when a Trisomy diagnosis occurs.  Research shows that fathers can often be locked out of support services.  This can occur for many reasons. If diagnosis happens during pregnancy, support services are often primarily geared towards the expectant mother.  It can be difficult for fathers or expectant fathers to get time off work to attend medical appointments with their partner or child. Some support services are female dominated and it can be hard for dads to reach out for support.  Societal expectations of fathers can also create challenges as some dads feel their role is to be strong, or supportive of their partner or to 'keep going' meaning their own needs are unmet. 

SOFT UK hopes to reach out to Dads and support them at every stage of their journey.  

We actively encourage Dads to become part of the work of SOFT UK, so that we are able to provide appropriate supports for Dads.  We have two Dads on our Board of Trustees and also a number of volunteers. 

 

 

Dads who contact our support service wishing to speak to another dad will be supported by Neil Charnock, who has been a trained volunteer with SOFT UK for many years.  Neil can be contacted through the Support Team on enquiries@soft.org.uk

"My daughter Angharad was born in 2010 and died after 11 days, the support me and my family received from SOFT UK was a great help.
I have been a telephone/email support volunteer for 8 years and support families through extremely challenging times These times can be especially difficult for fathers, so I feel I am in a good position to give a male perspective on Trisomy"

 

 

 

 

 

Dads also get the chance to meet up at our Annual Family Days! These are always well attended and its a good chance for dads to meet others with similar experiences. 

We would also really like to hear from Dads who would be willing to share their own stories or reflections, write articles or even just send us photos of them with their children. We are really keen to share stories and experiences so that other Dads coming to the organisation for the first time feel connected and less alone with their feelings.  If you would like to contribute in any way please contact us

Coping with Grief - For Men

In his latest article, SOFT UK Trustee Gareth Glendinning talks about coping with grief as a man.  Gareth lost his daughter Phoebe in 2006 to Trisomy 18. 

Losing a loved one is something we will all experience but the loss of a child is particularly difficult. We feel that we should always outlive our children and my personal experience is that there if nothing more difficult than arranging a child’s funeral. 

Men tend to internalise grief – I know I did. I locked it away in a box in the deepest recesses of my soul. I had to be strong for everyone around me particularly my wife and son.

Like most people, I was completely unprepared for the loss. Heartbreakingly unaware of the effects it was taking on me. Trying to provide the support function while not being able to identify that I needed help too drove me on an ever decreasing spiral but seeming to be completely level, calm and coping externally.

After what felt like an eternity, I felt completely unable to manage anymore. I was using work as a coping mechanism and was spending an increasing amount of time in the office. I lost a substantial among of weight as I wasn’t eating or sleeping. I needed to break the cycle.

After an ‘intervention’ one Christmas, I broke down and let everything out. I had to allow myself to grieve and finally started to listen to my own thoughts and feelings.

I started to let people in, I started talking about what I had been going through and I took time off work. I realised that I didn’t have to be the strong one all of the time. I could rely on those who I had given support to and ask for help in return.

Admitting you have a problem, any problem, is always the first step in healing. I had never felt able, as a man, to ask until it was almost to late. Almost too late for my job, my family and my health.

Most of my tears are shed when I was alone, usually driving, running or alone at work and until I was ready to face the grief inside and be ready to let it out.

If you are there right now, listen to your body and the loved ones around you and know that you can ask for help. Knowing, however, isn’t enough. Take a breath and ask for the help you need. 
 
 
Gareth Glendinning
SOFT UK Trustee

Luke's Story

My story begins in January of 2018. After my wife suffered a miscarriage in Nov '17 the thought of having another child scared me tremendously, so when in January and we found out that were expecting again, my shattered world was finally healing.  As the prospect of becoming a father again really held me together, we went for a "reassurance scan" on the 14th of Feb and everything was perfect.
 

My story begins in January of 2018. After my wife suffered a miscarriage in Nov '17 the thought of having another child scared me tremendously, so when in January and we found out that were expecting again, my shattered world was finally healing.  As the prospect of becoming a father again really held me together, we went for a "reassurance scan" on the 14th of Feb and everything was perfect.

 
Our 12 week scan was rapidly approaching and unfortunately, due to recently starting a new position at my work, I was unable to have the day off to go to the scan as I was working out of county. Before I left for work that morning I gave my wife a kiss on the forehead and asked her to let me know how the scan goes. I finished work early that day so had the call with my wife whilst on my way home and I heard those dreaded words for the first time.
"Trisomy 13"
"Trisomy 18"
"Trisomy 21"
That's all I kept thinking of. No longer the prospect of a healthy baby but what could be wrong. This is where my downfall began.
 
From that day on when I had a moment spare at work or at home I looked up statistics, the problems that comes with and everything else you could possibly think of when you get told your baby may have these conditions. Although i was preparing myself, I believe I was also setting myself up to fail. My life became what if... not what it is.
 
Although we already have children we decided to have a scan at 16 weeks to determine what the sex of the baby was.
Both of us sat there eagerly waiting to be told, it's a girl.....
 
I knew love before, but this time my heart was dancing, the daughter I was wishing for was now only at arm’s length and would be making her appearance in 20ish weeks’ time.
 
Due to the markers they kept picking up at every scan, all we could hear from the consultant was it's never too late to abort. Both myself and my wife declined many times. Our argument was "what will be, will be" no matter the complication, no matter the disability this was our daughter and whether she would have a full life or not, we weren’t willing to give that up on a consultant's say so.

The night my wife went into labour I remember everything as clear as day.  We had arranged to watch the boxing and the running joke became "what if i went into labour during the fight?" We managed to watch the event w
ith no problems (thank god) but little did we know whilst we slept my wife's waters went.
 
In the morning my wife realised that something wasn’t quite right so after a call to the hospital they asked us to go in and be prepared because we may be leaving with a baby.

They do their checks and say that my wife's waters have been broken too long to send her home.... we shall have our baby girl here soon.
 
24.09.18
Half 6 in the morning we get taken from observation into a delivery suite and within half an hour our daughter was here..
So small, so perfect....

Not breathing.
 
After 9 painstakingly minutes they were able to resuscitate our daughter, to which she was placed into an incubator and whisked off to neonatal. Took 3 hours before they allowed us to make our proper introduction to our princess.
 
The day after she was born they did the tests needed to determine what the final diagnosis was, which was full trisomy 18
 
After 8/9 days in hospital provisions were put into place to be able to bring our daughter home where she belonged as we didn’t feel it was right to send her to a hospice for her life to end.
 
Day 10 we waved goodbye to the hospital as we brought our daughter home where she belonged to live the rest of her days with her family making the most beautiful memories.
 
Day 16 started off as any day did our daughter was fed and her nurses came out to do their checks and they were happy with her as she was making progress. She started gaining weight, after being told she would struggle, our daughter carried on proving them wrong.
Her midday feed did not go to plan, she wouldn’t tolerate it in the slightest, the nurses came back out to us and helped us with her care until early hours of the morning.
 
Day 17. Is now the final hours of our daughters life, we could see the struggle our daughter was in. After a talk, we decided it was in her best interest to have morphine to ease her pain and allow her to slip away peacefully. At 2:25 on the 11th October our daughter took her very last breath in my arms after being told she didn’t need to hold on no more and it was okay to let go.
 
By far the worst experience of my life, to this day (23.3.20 as I write) I still have nightmares of my daughters final minutes.
But it is a 17-day period that I would relive time and time again if given the choice.

As I say today is the 23.3.20 and my wife and I are blessed to say we have a 7 month old boy who has filled the void (not replaced Florence). Our 4 year old is absolutely besotted by her baby brother and we are proud to say we have another baby on the way...
 
As much as our home is full of love, tantrums and stinky nappies. Our lives also contain very bitter sweet memories that we will remember with every second we live.
 
Forever our daughter, forever our warrior
May you rest in peace my princess
Till the day we meet again, my heart is forever yours.
Florence Delilah Daphne Johnston
You'll always remain our one in a million
Forever and always princess
Daddy
X

Joel's Story

Our names are Stacey and Joel; we are Angelo Jack’s Mummy and Daddy. I married my wife on 20th August 2011. She found out that she was pregnant on 10th February 2012 and we were expecting our first baby in October 2012. Going by her dates our baby was due on the 16th October 2012 and we had our 1st scan on 12th April 2012.

It was on this day that our world came crashing down. We were told that our baby had abnormalities, We were told that our baby had a large cystic area in the lower abdomen and an exomphacelous.

We were sent to see the prenatal diagnostics team, they reccomended that we have further tests to rule out chromosonal abnormalities. We went to John Radcliff hospital on the 16th April 2012 to have the CVS done and we were told that we would have to wait a week for the results to come back.

However my wife had a phone call from the hospital the very next day, she was informed over the phone that our baby had Edwards Syndrome.

It felt like our whole world had stopped and came crashing down on us. We had to go to the hospital the next day to discuss the results further and discuss our options. I was told that our babys edwards syndrome was most likely to be full Edwards and unlikely to be mosaic or partial; the only way to rule it out fully would be to have an amnio done.
 
We decided against an amnio and said what will be will be. We were advised to terminate our pregnancy as the outcomes were bleak. We were told that we had a 95% chance of loosing our baby during the pregnancy. We were told there was a high risk of a preterm labour, we were also told that if we carried on with the pregnancy and our baby survived the pregnancy then we had a 30% risk of having a still born baby.

At our scan we had our due date changed to the 24th October 2012. We had regular scan and checks, we had a lot of meetings too. On 23rd may 2012 we had our 20 week scan, my wife was only 18 weeks. We were told that our little baby is a little boy; we are going to call him Angelo Jack Smith. We have been told that he has got cysts on his brain (choroid plexus), his head is an irregular shape but we already knew that, his stomach is in his chest cavity so he probably has a diophramic hernia. Because his stomach is in his chest cavity it is pushing his heart to the right side of his chest. He has still got the omphacele but it does appear to be smaller. Apart from that everything else appeared to be well.
 
On the 28th July 2012 we had a 4d scan, we were told here that our son did not have exomphaleus but he had a cyst on his cord. 17th September we saw our consaultant again and had another scan, we were told that his heart is in the right hand side of his chest, the right hand side of his heart is dilated with a small left side, the septum does not look normal, he has a complex cardiac problem to add to the list of his other problems.

Our baby boy who we named Angelo Jack was born on the 27th October 2012. Our precious baby boy fought for 40 weeks and 3 days, he defied the odds for all this time. We spent a precious 2 hours with him before he passed away due to his edwards syndrome and a diaphramatic hernia. He was born at 18.39 and passed away at 20.30, he weighed 4lb 11oz and was 48.5 cm long. He was perfect in every single way.

https://ouredwardssyndromejourney.blogspot.com/

Chris' Story

Eliana was a true blessing to Joey and I. She was only very little, but her personality shone through her big expressive eyes.  She certainly told us as her parents what she liked (cuddles, having a bath) and what she didn’t (being out in her cot, getting out of the bath). Even though from the day she was born she struggled for life, we thank God for the time we had with her.  Eliana has been taken from us so quickly and it has been a struggle to cope and find meaning.  Why did this happen? What is God’s purpose?

However, as we went through the motions and dragged ourselves out of the house, something dawned on me.  Consider the simple flower.  Flowers are beautiful, but their beauty is only for a short time.  They have been perfectly designed to fully fulfil a purpose, but once the purpose is fulfilled, they are gone.  Try as we might no amount of prayers, nutrients or careful care from even the most diligent and loving hands can keep the flower beyond its intended bloom.  Eliana was our precious flower.  She bloomed in our lives and filled us with joy.

Her passing fills us with much sorrow, but I take much comfort to know she fulfilled her purpose, and, unlike the flower, her impact on us will be everlasting.  So, even though Eliana’s bloom was short, I thank God for her beauty and for letting us have the honour of caring for her.  I’m also very thankful for the people who helped us throughout – our family, friends and the North Tyneside Community Nursing Team.
 
Chris, Daddy to Eliana

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