I’ve decided to write a few posts to Milo. I think that the
experience of reflecting on his history will feel easier if
I can explain it in the way that I felt towards him at that time. As well as giving other parents in a similar situation hope I think that this blog will also help me to deal with the trauma of my pregnancy by documenting Milo's massive achievements.
You were a very wanted baby. From the minute I birthed your
sister I knew that the experience had been so profound, so earth trembling
momentous that we had to do it again.
Yet in treasuring yours and your sisters sparkling presence I felt no
sense of urgency to rush into allowing you into this world. Instead I savoured every moment with your
sister and nurtured her in a way that I knew she would enjoy our magical bond
yet mature and long for a sibling of her own to nurture in a way that meant
that she would be old enough to appreciate the whole magical experience of a
new sibling without forcing her to mature quicker than her years.
As her 3rd birthday quickly
approached I felt the familiar pang of desire for a new baby, for you. It was another rough winter for our family as
winter virus’s left me feeling depleted of energy, but on the 3rd
month of longing (and on the verge of setting my hopes aside for a few months),
a negative test that I’d discarded in the bin called me back to re-examine its
pastel lines, and there you were! On a
high I started a pregnancy diary, and a series of bump progression shots to
follow. Your dad bought me a beautiful
pregnancy journal full of crisp sheets longing to be filled with your amazing
journey. I was desperate to document and
savour every inch of your journey and appreciate all of the details along the
way.
You quickly swelled my belly but I wanted to relish in our
secret bond a little longer knowing that I was carrying a shining treasure
inside whilst others knew little of this wonder, it was our deal and our moment
to fully enjoy. Gradually it became more
difficult to hide and I never wanted to deny your existence and so by 10 weeks
your family were overjoyed at your expected arrival. At 10 days and 4 weeks I was so sure of your
humming presence inside of me that I dared to get out my trusty sonicaid and
there you were once again, strong and clear.
My morning sickness was worse whilst carrying you, and there were days
where I would feel just green and have no energy, at least another good sign of
a healthy pregnancy I thought. And then
I felt you move, barely 11 weeks but you were so clear! Those spaghetti wriggles in my tummy as I
gazed out of our dining room window, another sign that you were with me.
And so at 12 weeks whilst at work and in between counselling
other women over their screening options and results I nipped in for our scan
to confirm that you were there and well.
The atmosphere with chirpy as she double checked with me and my husband
that we were happy to decline the nuchal translucency test, my husband pondered
over what she was asking but I quickly replied to him that it was the screening
for down syndrome and as this would make no difference to us then there would
be no point in taking the test. The
familiar sonographer was silent as she worked. Then with a fixed glassy gaze
she turned to me and said ‘Laura I'm really sorry to have to say this to you
but there is a problem with your baby, it’s got a cystic hygroma’.In that
moment my world shattered as my brain reeled through the images of my training
desperately trying to latch some meaning to the words that were uttered. Then as she spun the screen it became much
clearer. You had a huge bubble of fluid
down your spine, a gross abnormality by any standards, yet you were still my
beautiful baby.
We travelled up to the city general hospital where I met up with our lovely consultant, who’d taken the time to come down and see us and explain things. Still feeling optimistic that whatever this problem was you’d overcome it , the consultant very quickly shattered this optimism with his ‘umms’ and silence and finally by the devastating statement that he was giving you less than a 10 % chance of surviving the pregnancy. I was offered a diagnostic CVS the following week, an amnio in 3 weeks or just to ‘await events’ various different syndromes were spoken of, the list seemed scary yet ‘downs’ seemed familiar. I wanted out of that building intact and for my dreams not to be shattered, I didn’t want any testing as I wanted to give my baby chance to heal yet the finality of the consultants tone spoke volumes. We had to expect that the worse was going to happen and could happen at any time. Your skin was already very oedematous and it was only a matter of time before the fluid would start to collect in and around your vital organs. I agreed to be seen again at 15 weeks if I had not miscarried in the meantime.
We left in a daze, with the our optimism stamped firmly
out. Me and your dad went to a veggie
café and ordered breakfast together but
I found it too difficult to swallow. We
didn't know what to say to each other. I
felt gut wrenchingly guilty for causing you to become poorly. Was it the migraine tablet I’d taken, the
mould in our bathroom, the bumpy ride that I’d given you when I was sledging at
5 weeks pregnant or the sneaky drippy egg that I’d consumed whatever it was I’d
obviously been far too complacent this
time round and not careful enough of my precious cargo. The consultant had tried to reassure me that
it was nothing that I had done that had caused you to become ill but inside I
knew he must be wrong. He said that in
these circumstances women generally knew that the pregnancy didn't feel right,
but you had felt so right, you DID feel so right, further proof of my
complacency and lack of connection with reality.
The rug had been firmly swept from beneath my feet, I was losing you, I’d lost all sense of
myself and how could I go back to my career as a midwife, this too was lost. I felt like I wasn't ‘allowed’ to be pregnant
and avoided people to save them and myself from feeling awkward, not knowing
what to say or how to explain. I deleted
the pregnancy app off my phone and gave away the beautiful pregnancy journal,
feeling that the emotions of this experience were far too sensitive to be
captured on those crisp sheets. I desperately
wanted to share how beautiful your picture was on your first scan photo as
other excited parents did but I just felt sadness for my poor baby and robbed
of even the privilege of this simple act.
So instead I treasured your image with me hoping that one day you’d defy
the odds and I’d be able to share your first picture as testament to how far
you’d come.
In the few weeks that followed, every day dragged, in limbo
waiting for our next scan appointment to see you. I dutifully packed my hospital bag to support
me though the stay when the inevitable happened whilst desperately grappling
out for anything to anchor my hope to.
The statistics were clear and success stores few and far between. 1 friend gave me some reiki and I felt your
green/blue aura glow throughout it.
Another advised me to sleep with rose quartz next to my tummy which I
did. A friend made a rose quartz pendant for me in the shape of a lily, the symbol for motherhood. Rose quartz apparently helps to provide emotional balance and keep inner peace throughout pregnancy. I also read ‘Spirit Babies’ whilst
relaxing in our hammock and letting you absorb the warmth from the sun, trying to
find some meaning for why you were so poorly. Whilst there was still a 10%
chance of hope, I was going to do everything in my power to try to help you to
get better, I needed to feel like I was
doing something. I photocopied every
page of my pregnancy notes knowing that when I lost you I would lose instant access to this connection to you too and must of re read the scan report 100’s of times.
We reached the 15 week point and I felt somehow reassured by
your increasing regular wriggles. Yet as
I lay on the bed the consultant (shocked that you had made it this far) spoke
of your progressing collection of fluid.
Your skin was terribly bloated, the septated cystic hygroma was no better and the fluid was now around
your lungs as well as having glandular lymphocysts. The images on the screen did not look like a
baby and the inevitable was now clear.
We asked if we could find out your gender and as he said you were a boy
I turned to your dad as we gently squeezed each others hands with tears rolling
down both of our cheeks. It just seemed
so unfair that we loved you so much
already how could you possibly leave us? At this stage the consultant predicted that your left ventricle in your
heart looked smaller but he still said that it was too early to say, he thought
that you obviously had a major cardiac issue.
I knew that if we lost you that I would forever want to know
why this had happened and what could I do to prevent it from happening again in
the future. Yet I also knew that the only option at that stage would be for me
to consent to my baby to have a most mortem, something that I knew I would
never be able to do. We were also told
that the risk of the cystic hygroma massively outweighed the risks of an
amniocentesis and so we made the joint decision to find out why you were so poorly. It was not a nice procedure but we left
feeling hopeful that the results would show no chromosomal abnormality as we
were told that if there was an abnormality then your 10% chance would go down
to 0%. Having found out that you were a boy ruled out turners syndrome and I
felt strangely confident that having ruled turners out you would be ok. This was the Tuesday and by the Friday I had
still not heard any news although I was apprehensive about your dad going to
work that day.
I got the phone call mid morning and my world fell apart
once more, It was sunny outside as I
took the call away from your sisters ears.
You had down syndrome, you were not going to survive.
I was devastated, at 28 I knew it could happen to anyone but
didn't think it would be me. I hysterically called your dad and asked him to
meet me at the hospital, I was also furious and desperately wanted the
consultant to change his mind and tell me that he’d got it wrong. All I wanted was for you, and yet I was being
told that where others would abort you I would be denied the chance to take you
home. Your condition was too severe the fetal medicine consultant had never known a baby to survive with such severe complications. I
sobbed and sobbed, the world was so unfair.
Aborting you was not an option even with no chance of survival I wanted
to let you decide when was the right time to leave, in your own time. All I could do was to go home and as much as
possible savour this precious time with you and prepare a meaningful way to say
goodbye to you. As a further cruel twist I was told that if you proved to
be a bit of a fighter then as your hydrops progressed it could also lead to a
syndrome called mirroring hydrops where fluid would collect around my vital
organs and be potentially life threatening.
If I had gone past 21 weeks then at this stage they would advise
feticide (injection of potassium into your heart) to save my life. This thought didn’t bare thinking about and
so I put it to the back of my mind.
Coping day to day at this time was extremely difficult for
me. All I wanted was to know you were
all right yet this wasn’t going to happen.
I broke down continually sobbing; unable to answer your 3 year old sisters
request from downstairs to help her finish her jigsaw puzzle or to move from
hiding behind the fridge door crying.
Your father, as well as the lovely screening midwife at the hospital
were brilliant at times like these as I went in to discuss things with her
again. A hug when I felt so alone and
vulnerable was really appreciated.
I'm so sad to say that I planned your funeral, your aunt
agreed that it would be ok for us to bury your tiny body on her farm so that I
could visit you somewhere special. Your
grandma knitted you some tiny booties and a hat and I remember sobbing for
hours about needing a blanket for you.
These days were dark, attempting
to be realistic and prepare my self when
my hope had been stolen from me was
agony. Life was far easier clinging on to the 10% than now.
At 16 weeks and already feeling huge your sister and your
cousin had both asked me if I was having a baby and stumbling I’d denied
it. Unsure of what to say or how to
explain your presence or your predicted fate.
Knowing that this could not go on we told your sister of the presence of
her little brother, a bitter sweet experience, but of course she already
knew! We decided not to tell her the
certainty of your prognosis but instead told her that you were very poorly. Her
shining optimism and unconditional love for you was heart breaking yet somehow
therapeutic to see.
I continued the daily ritual of listening to your heart beat
with my sonicaid, sometimes recording it, never knowing if it would be the last
time I’d hear it.
At almost 17 weeks I wrote this on a parenting forum where I
had previously irued to seek reassurance that you would be ok ;
‘We found out that we are expecting a little boy who we
named Milo. Milo is really poorly though, he has down syndrome and because of
his cystic hygroma and almost certainly heart defect the hospital have told us
that he will not survive. He's a happy little boy though and wriggling and
kicking me a lot, it will be lovely to know that his life was only filled with
love and his mama continuously carrying/ holding him. I need to feel like I've
never given up on him as part of my healing.
I'm almost 17 weeks now and although he could go at any time
the hospital have also said that he may survive to 23 ish weeks.
I have lot's of lovely supportive family and friends who are
going to organise a blessingway for us both and crotchet squares each for a
shawl to stay with him. I'm just focusing on getting by and enjoying this
precious time with him.’
Your strength carried you forward to the next scan
appointment and at 17 weeks I realised that you were such a fighter and that I
needed to reclaim the hope that you could survive. Whilst the consultant during the scan was
still less than optimistic about your survival your father and I were quite
excited that the hydrops wasn’t progressing and you were still a really active
baby. I finally gave myself permission
to not hide my hope and belief that you could survive and also to start
researching a little about your heart condition
Your down syndrome still seemed completely insignificant to the fact
that you were poorly. Although in
retrospect I also underestimated the impact and severity of your heart
condition.
You reached the 20 week point and the consultant was
astonished that you’d survived. I wrote
this at the time simply ecstatic that we’d climbed Everest together ‘The most
active baby all day apparently! The consultant was very surprised by how well
he looked and said that he fully expected him not to have a heart beat today.
The consultant got so flustered that his excess fluid had almost completely
gone that he forgot to do half of the measurements and we had to go back in for
another scan! Cystic hygroma now measuring 6.8 mm (it was 11!) which is only
0.8 above the normal range- and is now classed as nuchal thickening. Fluid
around his body also massively decreased. We can finally start believing that
we might have a baby. He still appears to have a heart problem (complete AVSD)
so we are going to have an echo on Thursday- and he might prove them wrong
again, we'll see! I'm hoping that Milo will continue to prove the consultant
wrong and be the first baby he's ever had with these complications to survive.
We're still not 'safe' as there is loads of time for complications to occur,
but for now things are looking optimistic.
I think he's quite cute too! Sucking his thumb with his
other hand by his face.
Milo you are amazing!
x
