Mollie Carmel Whitfield

1st October 2009 - it is nearly 2 years since Mollie was born and nearly 1 year since she left. The
happiest and saddest times of our lives. Today is the first time I have written about our journey
with the most beautiful, perfect, happy, smiley, strong and brave baby I have ever met.

The 9th October 2007 was when Mollie was born. It had been a long hard labour and ended in an
emergency C Section but we didn’t mind as long as she was safe when she entered this world –
that was our only concern. As soon as they lifted her out she let out a big scream to let us know
she was here and we all laughed. She was then handed to her daddy who looked the proudest man
alive.

We stayed in hospital for 5 days and I remember getting very little sleep as I couldn’t take my
eyes of our beautiful baby girl. She was such a good girl and with the help of the midwives we
managed to establish a good breastfeeding technique. I remember when we took her home we were
feeling very scared being first time parents but also very excited and we were so very very happy.

We made the move from England to Australia just 13 months before Mollie was born and we felt that
our lives were perfect. Mollie was such a good baby and we couldn’t believe how lucky we were.
She always woke up at around 5am to have a snuggle on daddy’s chest before he went off to work.
From just a couple of weeks old Mollie was smiling at us and even our midwife commented on how she
was tracking our every move and was obviously a very clever baby.

The next few weeks flew by as we had visitors from England and we were very busy sightseeing and
enjoying time with our beautiful daughter. It was when Mollie was 5 weeks old that she started to
have an issue with breastfeeding as she seemed to feed for 5 minutes and then start crying so I
would try the other side and again she would feed for 5 minutes and she would pull away and start
crying. We immediately attended a breastfeeding clinic where Mollie was weighed and checked over
and I was prescribed domperidone to increase the milk to my breasts as they felt that lack of milk
may be the problem. We went back the following week as Mollie was still not feeding well and the
midwife was concerned that Mollie had not put on any weight and she called a consultant in the
Neo-natal ward. We took Mollie to the ward and we met Dr Scott Morris. He was a very warm and
gentle man and he carefully checked over Mollie. It was really scarey because he was checking her
arms and legs everything . . . . I remember thinking ‘what is he doing’ it’s just her feeding
that’s the problem. He commented that apart from looking pale she looked healthy. I said she has
always been pale – it must be her English skin. Her skin was so beautiful just like a porcelain
doll – perfect. Dr Morris went on to ask me about the movement in her legs and I recalled a
conversation with Mark just a couple of days before that whilst changing her nappy I noticed that
she wasn’t kicking about as much. It was at that point that Dr Morris said he wanted to admit her
to the ward to run some tests. I remember struggling to hold back the tears and thinking please god
please god don’t let them find anything wrong. Mollie had various tests done during the course of
the day – xrays, scans on various parts of her body and everything come back normal. I prayed and
said thank you god. Dr Morris wanted Mollie to stay in overnight and we arranged that we would stay
at the hospital too so that I could continue to breastfeed but also supplement her with a bottle.
Overnight Mollie had put on some weight and the next day Dr Morris agreed for us to take her home
with the agreement that we would attend the breastfeeding clinic the following week and continue
with the top-up bottles which were my own expressed milk. These top up bottles were working fine
and Mollie seemed happier.

On Thursday 29th November 2007 Mollie and I attended the clinic and she had put on weight which was
a relief. As agreed we paged Dr Morris who quickly came to see Mollie. He had at least 3 other
people with him and I don’t recall who they were. But they were all looking over Mollie and Dr
Morris asked me about her leg movements and I said that it hadn’t changed. He asked me to get
Mollie dressed and have a seat with him. He calmly explained that he was very concerned with
Mollie’s lack of muscle tone and that he wanted to do a blood test to rule out a condition called
Spinal Muscular Atrophy. I remember thinking what? Spinal??? Oh god please no don’t let my
beautiful baby be confined to a wheelchair. I don’t actually remember what else he said to me at
this point but we moved from the clinic to a private room in the Neo-natal ward where Dr Morris
again explained to me that he was testing for Spinal Muscular Atrophy. I remember the words ‘no
cure’ ‘no treatment’ unable to sit up or hold head’ ‘die of respiratory failure’. He
also said that this is the worst case scenario and they wanted to rule it out so I asked what the
best case scenario was and he told me some kind of myopathy which would have her confined to a
wheelchair. I burst into tears praying for this best case scenario even though I had only a few
minutes prior been praying that she wouldn’t need a wheelchair.

I just sat cuddling my little baby thinking they must be wrong – this spinal thing – they must
be wrong. The nurse came into the room and put Mollie into a crib and wheeled her out to take the
blood – I went too but I wasn’t allowed to hold her – she had to remain laid in the crib and
after 15 minutes of listening to my beautiful little baby girl screaming and screaming I couldn’t
take any more and I left her and went back into the private room. This is when I rang Mollie’s
daddy. I knew I had to be strong but I knew I had to tell him what they were testing for. He asked
me if I needed him there and I said no I will see you at home as it was about 3pm at this point. It
was another 15 minutes before they had finished with Mollie. As soon as the nurse told me that they
had got all the blood they need I whisked her up into my arms. We went back into the private room
and I immediately put her to my breast for comfort – that was the longest Mollie had fed on my
breast ever. I just kept looking at my perfect baby girl thinking that it is all wrong – it must
be wrong. Dr Morris kept checking on us from time to time but were content to leave us alone whilst
Mollie was feeding and calming down. I remember singing to her the Lullaby song and twinkle twinkle
little star. At 3.45pm Mollie’s daddy walked into the room. We just burst into tears.
Thankfully Mollie had calmed down and her daddy didn’t need to witness his little girl in
distress. Dr Morris and his registrar then came in to talk to us both and once again went through
what Spinal Muscular Atrophy was and what it would mean. He confirmed that the results of the blood
test usually take about 6 weeks but he had spoken to the lab and they would get the results back the
following Thursday. He said we could take Mollie home and he would call us with the results. I
remember the registrar saying ‘take her home and smother her with love’. We took Mollie home
and we cried all night, we didn’t sleep and we didn’t eat and we both just felt sick. The
following day Dr Morris called to ‘see how we were’. I said that we were distraught and that we
didn’t understand why they were testing for worst case scenario first – why not best case first.
He explained that the other tests were far more invasive, like muscle biopsies, and he didn’t
want to put Mollie through any unnecessary pain. I think it was at this point when I knew that the
Dr thought it was SMA. He asked did we want a second opinion and I said yes. He called later that
afternoon to say he had arranged an appointment with a Neurologist on Monday 3rd December at 5.30pm
and gave me his own mobile number in case we had any questions as he was on annual leave the
following week. That weekend was a blur. We bathed Mollie a lot watching intently at her legs
moving in the water thinking it must be wrong. We read on the internet about SMA and I particularly
remember the drawing of the ‘floppy baby’ and picked Mollie up and put my hand under her tummy
and she flopped over my hand. The rest of the weekend was a blur. We attended the appointment on
the Monday and the Consultant was the coldest man I’ve ever met in my life. He checked Mollie
over and after I dressed her and sat down he said ‘I agree with Dr Scott Morris – she has Spinal
Muscular Atrophy’ ‘ life expectancy is less than 2 years but usually around 8 months old’
‘and if you decide to have more children then there is a 1 in 4 chance they will have it too’
– and that was that. I remained composed thanked him for seeing us at such short notice and just
about managed to get to the lifts before I broke down. Why oh why was this happening??? Why has god
chosen Mollie?? How the hell was I meant to watch the most precious thing in the world to me die in
front of us?? We managed to get to the car and I called Dr Morris on his mobile and said that the
Neurologist agreed that it’s SMA – and I asked what are the chances of the blood test being
negative – he said sadly there was little chance of it being negative so I explained that we
wanted to return to England so Mollie could meet her extended family. This was something that Mark
and I had discussed over the weekend and had decided was right if the diagnoses was SMA. It was at
that point that we agreed that we would never cry in front of Mollie again and that we wanted her to
have the happiest life we could possibly give her. The following afternoon Dr Morris visited us at
home and checked Mollie over and said she was fine to fly. That afternoon we booked our flights for
Saturday 9th December – just 4 days away. During those 4 days we arranged Mollie’s passport,
Mollie had her vaccinations, sold our vehicles, seen a solicitor and signed over our house, arranged
removal specialists and storage for our furniture and put our house on the market to be sold.
Thursday 6th December 2008 we received a phone call confirming what we already knew. Once again Dr
Morris called round to the house during his annual holiday as he had a Christmas present for
Mollie.

We arrived back in England safe and sound. Mollie was such a good girl, really and truly. We went
to live with Mollie’s ga-ga and lots of family came to visit. We got in touch with The Jennifer
Trust for Spinal Muscular Atrophy who provided us with lots of information and arranged for a
support worker to visit us at home. Mollie’s support worker Claire came within a couple of weeks
and provided us with multi-sensory toys for Mollie and also some warm clothes as they knew we had
just arrived back from Australia. Claire explained in detail what to expect. She also told us what
health professionals we needed for Mollie and she also put some of the wheels in motion for these.
Claire also explained that because Mollie’s lungs were weak then we must keep anyone with the
slightest cough or cold well away from her which we did. But we knew we couldn’t keep her wrapped
up in cotton wool and indoors all the time as that was no life to lead. We wanted her to have as
much of a full life as possible. We had a lovely Christmas and Mollie was showered with gifts –
the most special being the hand-painted bauble from her consultant in Australia. We went to a family
New Years eve party and even held a darts tournament which is to be an annual event to raise money
for the SMA charity.

Mollie got through winter without any illness and in February when she was 4 months old we took her
swimming and she absolutely loved it. The water gave her the freedom to move her arms and legs and
the smiles on her face will live with me forever. From that moment on we took her swimming 2 or 3
times a week – it was very much part of our daily routine.

Although we tried to live our lives as ‘normal’ as possible we were well aware that at any point
Mollie would lose her ability to suck and swallow but this did not happen until she had time to
enjoy tasting lots of different foods – especially chocolate and icecream. At 7 months old and a
very long weekend of her 5oz bottles taking upto 2 hours for her to drink we decided the time had
come for her to have an NG tube which would feed her through her nose straight into her tummy. This
was a very sad day for us as we thought this meant it was another step closer to losing her and of
course her life expectancy of 8 months was only a few weeks away. This wasn’t the case and we had
an 8 month birthday party for her which she enjoyed and still managed to have a taste of icecream.
The next few months continued ‘as normal’ we went swimming a lot and went to feed the ducks a
lot. We went on holiday to the Isle of Wight and Tourquay. We had a good time and Mollie laughed
every single day. It was fast approaching Mollie’s 1st birthday and it was such an amazing
feeling. We celebrated with family and friends with a house party on 5th October 2008 followed by a
quiet family celebration on her birthday the 9th October, followed by a swim party on the 12th
October – this was the best day !! Mollie couldn’t believe her eyes that all her friends and
family were in the swimming pool which she went to regularly – she didn’t know where to look and
we all had a fantastic time.

We felt so lucky to have had this time with her and we were planning the next party on Halloween,
then bonfire and we were even thinking of Christmas.

Sadly this was not meant to be . . . . we had been out shopping on Sunday 26th October 2008 and we
were having to suction Mollie’s secretions far more than usual and up until this point Mollie had
kept sick free so we took her home. On Monday 27th October we noticed a rattle sound coming from
her chest so we took her to her GP. He said it may be the start of a chest infection and gave her
antibiotics and also ventolin. We hadn’t had ventolin and the volumniser before and Mollie REALLY
didn’t like it. We knew she wasn’t well and we were really worried about her and her home nurse
visited her that afternoon. He too was concerned and arranged for her respiratory consultant to
come to the house to link up the Oxygen machine to her nighttime ventilator to help her through this
illness – which he did that afternoon. Mollie spent all day in and out of sleep and that night we
decided to put her on the ventilator much earlier. Her daddy was sleeping with her that night but I
just couldn’t sleep – I was only in the next room but I couldn’t sleep so I took over from
Mark. I pretty much watched her all night. She stirred a great deal and her oxygen levels seemed
to be dropping a lot. The only time she seemed rested was when she come to sleep on my chest for a
couple of hours. It was about 5am on Tuesday 28th October 2008 when Mollie stirred and this was her
usual time for waking up and I took her off the ventilator to suction her as we did every morning
but the secretions didn’t seem to be shifting. I called for Mark and he tried too and then her
Oxygen levels were dropping rapidly. We put her back on the ventilator but her oxygen levels were
still dropping. I was crying and not really knowing what to do. Mark called an ambulance. He was
on the phone to them when Mollie’s level dropped to 20 and I kept saying ‘Mollie please don’t
leave me’ ‘Mollie’ please baby don’t leave me’. Mark was on the phone explaining what was
happening when he noticed that the Oxygen tank was empty so he replaced the tank and her oxygen
levels started to rise slowly. ‘thank you god thank you’. As the ambulance wasn’t here yet I
called Mollie’s GP as he had given me his home number and he said he would come right around. The
ambulance crew arrived but all they wanted to do was take Mollie to hospital. We had decided from
the start that we didn’t want any invasive treatment for Mollie or to be kept alive by machines.
I asked them what would the hospital do differently for Mollie than what we are doing here – they
said nothing. Mollie’s GP arrived and we explained what had happened. He examined her and told
us that Mollie had lived her life but it was time for her to go – I screamed NO NO it’s not time
– this is the first time she has been poorly. He said she was too tired to survive and that even
on the fullest amount of oxygen her levels were only 60 and her heart rate was 180. We then had to
make the hardest decision we ever have in our lives. Mollie was given some morphine to make her
comfortable. We took off her ventilator and oxygen mask and I held our beautiful little baby girl
in my arms where she fell asleep just a few minutes later cradled by me and her wonderful daddy. 8am
Tuesday 28th October 2008.



We are so very proud of you Mollie. You taught us so much in your short life. You taught us that
we should smile and laugh even when times are hard. You taught us to be strong and brave and we try
Mollie we try very hard for you. We love you and miss you so much. RIP our beautiful little girl.
xoxoxoxoxoxoxoxoxo