Brendan Coiley



Brendan's Story

Our baby boy, Brendan James Micheal Coiley (little wing) was born on Mother’s day.
 
 At 10.58am on the 31st March 2019, he came into this world and he lived for one hour and one precious minute. He was born at 37 weeks and weighed 4lb 11. He was so handsome with big beautiful dark black eyes.
 
And then he was laid to rest on a rainy Thursday morning.
 
His story was as unique as every little life that graces this earth, and we knew this from the moment we found out we were expecting him.

 
"He had such big, beautiful dark eyes."


 
I have two other children from a previous relationship, but then I met Brendan and both of our lives changed in such a short space of time. Brendan always wanted a child, and after only 3 months of falling for each other I fell pregnant!
 
I knew the risks. My womb isn’t the same as others, it’s spilt in two and for me to carry a child comes with massive risk of miscarriage as I had with my first daughter Chloe or of pre-term labour like my daughter Jessica was at 34 weeks. But nothing was going to bring us down we were going to both get our happy ever after or so we thought.
 
I was taken great care of, and had my first scan at 6-8 weeks and every two weeks after that in an early pregnancy clinic.
 
Our little peanut’s heart was racing and doing so so well. We had our scan at 12 weeks still everything was as it should be, looking and doing great - so much so that we were told not to come back until our big scan at 20 weeks.
 
At 16 weeks, I remember standing in the middle of the baby section in Matalan and not being able to pick something out like something was holding me back -  that something, I thought, was not knowing what the baby was going to be, boy or girl.
 
With this in mind I went home to Brendan asking him should we book a private scan to find out, and we did. I remember being in work that Saturday buzzing about how we were going to tell everyone. Pulling up to the private scan,  awhh the excitement was just unreal,  we could not stop smiling from ear to ear, but I remember the weather was absolutely miserable, just lashing out of the heaven.

Here I am with my mam and dad

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Our world turned upside down

Little did we know that in a few short mins that our mood was going to match that day. Cold and numbing.
 
Laying on the bed in the dark room holding Brendan’s warming hand looking at each other expecting to hear “you are having a... “ and instead being met with a terrible silence.
 
Do you ever get that gut-wrenching feeling when something is about to happen? Your whole insides feel like they are turning around -  that’s what this felt like. I kept saying "I’m hard to scan he sits on the right side of my womb", but that’s not what she was worried about. She took the probe away and suddenly asked where we were based for care. She said “I can’t tell you what your baby is you need to go to the hospital there is no fluid around your baby".
 
Just like that our world crumbled around us! I didn’t know what it meant, but I knew it was bad. Brendan tried to stay so positive but I knew. I knew by the people’s faces when they handed us the paper for maternity. I knew by how they didn’t let us pay. I knew by how they quickly disappeared into their rooms to avoid the situation that just presented itself late that Saturday afternoon.
 
Walking out to the car, I remember getting soaked but not caring, wanting to throw myself down on the soaking wet ground and just not giving a damn. Tears rolled down my face, merging with the rain already coursing down. I just remember my heart physically breaking.
 
I couldn’t even look at Brendan, I just knew whatever was coming was bad. We drove home where I just lay silently crying and sobbing numb on the sofa for hours. Brendan was phoning family and friends searching for answers as to what no fluid meant, what was next, what were we going to be told. We had to wait till Monday to know the fate of our little baby.

   

Not knowing what to do 

We tried everything. I made myself sick that weekend by just drinking and drinking gallons of water trying to replace the fluid, foolishly not knowing that I couldn't.
 
Monday came and I went to ante-natal. We went to a back dark room to a young consultant I had never seen before. She explained to me there might be a few reasons for the fluid not being present: first was that my waters had gone, but I knew they hadn’t, I wasn’t leaking.
 
She then explained that I would have to see specialist in fetal medicine and that usually I’s have to wait two weeks for them to phone me but then said: “sure you probably just miscarry in the meantime.”
 
I was shocked at her coldness. As I walked out she commented on my boots as if it was a normal thing she had just told me even though she had reached in and ripped out my already-broken heart.
 
I went home trying to take in that I’m going to lose this little one just like I did his sister when I was only 21 years old. You never forget that pain, it buries itself deep within you and you never escape it. But my phone rang not even 20 mins after I arrived home, fetal medicine wanting to see us straight away the next morning.
 
We were introduced to Doctor Wong, he scanned me slowly and very intensively. Telling us that the fluid was gone, he explained that this can be a problem with the placenta, or it can be something much more complicated like the kidneys. He then confirmed that the placenta was working well and that the baby was getting everything it needed from me, but that my baby's kidneys and bladder were not present.

Amn't I so cute...!

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Our Brendan Had Potters Syndrome

He said our baby had Potters Syndrome which presents itself in the form of an absence of fluid - Oligohydramnios is the medical term. He then explained that that was just one problem: the other was no kidneys or bladder. He explained that when a baby is forming in the womb week to week, at 7-8 weeks is when the buds of the kidneys start to form and take shape but this little one's had failed to do so. He told us the name of the condition was bilateral renal agenesis, and in this case it was so severe that the baby had no bladder either.
 
I just sat staring at him as the blood drained from my face. The words coming out of his mouth sounded muffled, Brendan was panicking asking all the questions he could. "What does this mean, can anything be done?"
 
But I remember the doctor's face after a long pause, just saying that there was nothing they could do, that our baby would not survive when outside of the womb. The only time I spoke was to ask was I going to miscarry? He replied that I would likely carry the baby to term, but added that when baby was born they have no idea of how long he or she would survive. It would literally be minutes or hours if we are lucky, we were told.
 
A baby breathes in the fluid which goes through the organs - lungs, kidneys back out the bladder and out into the sac again - with the organs developing every time this happens. But when the fluid is absent the organs can't develop properly. The doctor told us about the risk of deformation for the baby’s limbs and features too. He explained how the baby would react when born, and how, without developed lungs the little one would make a gasping motion for air as they would slowly stop working and the baby would gently pass away.
 
We constantly asked would baby be in pain and he said “no it would be like falling asleep”.
 
We researched the baby’s condition. It's very rare, a chance of survival is very low, and we read there was no cure - except one little girl in the US whose mother was a Congresswoman. The baby in that case had amino infusions everyday for hours and the baby then had a kidney transplant from her father, but that wasn't available to us.  

    

Carrying Brendan full term

We told no one but family at first, but with my job being so public I had to tell work my clients and then let everyone know. I remember someone asking Brendan...’like why is she still carrying the baby if it’s not alive?!’ People never fully understood what was happening.
 
I tried so hard to stay in work as long as I could, but the pain of carrying a baby with no fluid protecting me from every excruciating move that he would make just took it’s toll. For near 10 weeks I would wake crying with the constant pain every day and night.  I could feel his little limbs just trying to find the space to move.

'I kept saying in my head: "please don't come out yet that's the only life you have in there." '

I used to think if I’m in pain and the wee one is not then give me all the pain that needs be.
 
I kept saying in my head "please don’t come out yet that’s the only life you have in there."
 
For the last five weeks of my pregnancy I was in slow labour I bled and my mucus plug came away slowly and gradually.  I had a dry natural birth but would I do it all again as hard as it was? Yes, yes I would.
 
I remember wanting to buy things but couldn’t, wanting to get excited about the birth but couldn’t, wanting someone to have a baby shower for us but no-one did. Everything was stripped from us, taken away instead of these wonderful things we were left planning a funeral for our baby that hadn’t even arrived.

Hugs and kisses from Daddy...

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That was my beautiful little boy 

He was here and that was his life in me, but when he arrived he was gone so soon. That was my beautiful little boy.
 
One thing we had to look for was smaller gowns to bury the baby in. It was so hard trying to find something and having to buy for both boy or girl not knowing what he was going to be. I had the tab on my phone for so long going back and looking at the same ones again and again not wanting to order them to make it real.
 
Funny thing was he ended up being bigger than we expected: the day he had to be collected by the funeral directors my mum had to video call me from the shop where she went to pick a christening gown.

"He came out so perfect like a normal tiny baby boy and will continue to live through us. We talk about him everyday, our brave handsome boy."

It fitted him perfectly, and we dressed him in it talking to him like he was still with us - telling him to ‘put ur wee arm in’ and ‘Awk look aren’t you gorgeous, let’s put your hat on!’ His hat fitted round his little face, so petite and perfect. That was all I had with him, to hold his little body one last time before they took him away
 
He came out so perfect like a normal tiny baby boy and will continue to live through us. We talk about him everyday, our brave handsome boy.  


    

Help and Support

I had never heard of the condition that baby Brendan had before he was diagnosed. No support was there or given but through other unique babies I found out about Every Life Counts and Vicky. I can honestly say if I hadn’t found this community and organisation I would have been lost.
 
They offer continuous help to parents in similar predicaments. Losing a child is one thing but knowing that you are essentially carrying a terminally ill child and there is nothing you can do to save them is another. Talking to the inspirational women including Vicky herself helps me heal, it helps me get through each day. We have a connection that bonds us in a way most people won’t understand. I cannot put into words how much this has changed me and Brendan as people and as newly expecting parents again. But I do thank Every Life Counts for listening and sharing baby Brendan’s wonderfully beautiful but tragic short story.


 
 

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Some conditions including POTTER'S SYNDROME, POTTER'S SEQUENCE and RENAL AGENESIS mean that a lack of kidneys or kidney development causes a decreased amount of amniotic fluid – which can also mean that the baby’s lungs fail to develop. It has tended to be associated with a very poor outcome but this is not invariably so, and a new treatment means the outlook may dramatically improve.

US Congresswoman Jamie Herrera Beutler was told that her daughter had Potter’s Syndrome and that “It’s 100 per cent fatal. She will either be stillborn, you’ll miscarry, or she will suffocate in your arms after she’s born”. But the Beutlers urged doctors to try an experimental treatment – injecting a small amount of saline into the womb to act as a substitute amniotic fluid.

Abigail Beutler, was born in July 2011, and is thriving, sitting up, chattering and playing with her adoring parents. She is awaiting a kidney transplant and her Dad, Dan Beutler, is a match. Abigail’s story may now change the treatment protocol for Potter Syndrome.