Sarah-Hope’s cow’s milk protein
allergy… sickness and it’s impact on development
It’s been an
interesting year. Sarah-Hope, having started the year with her brilliant
walking achievements, also started on a new milk formula. About half the kids
with Sarah-Hope’s condition have a cow’s milk protein allergy. As a precaution,
Sarah-Hope was moved onto a soya formula as an infant because the allergy could impact platelet
levels etc. We wanted to support her growth by giving her more calories. While
PediaSure is cow’s milk based, it is lactose free. We started giving her one
feed a day and she seemed to tolerate it well. We then doubled the amount of PediaSure
she was getting. She seemed fine, but she did seem to be going to the doctor
every couple of weeks and put onto antibiotics for various infections. Three
months later, Sarah-Hope landed up in hospital. A scope revealed that her small
intestine was so inflamed it was flat and couldn’t absorb any food, she had
ulcers all the way up her rectum and colon – she had severe colitis. She was
fed TPN by an IV line which gave her the nutrition she needed while her gut
rested for a few days. We challenged her gut again and she didn’t tolerate
feeds so went back into theatre for a broviac insertion so we had longer term
access to an IV line for feeding. After three weeks, she went home back on her
soya formula and ravenous as her inflamed gut was being treated with steroids.
I was amazed
by Sarah-Hope. Now a busy toddler, I had no idea how she would tolerate being
confined to a cot for weeks on end. I remembered those platelet transfusion
days during her first year of life – but babies are so much more tolerant! What
I underestimated was having the experience of being able to talk her through
it. She understood what was going on. She got into a whole new routine – when
she saw the nurse walk in for observations, she put her toe out knowing exactly
what to expect.
I ‘trained’
her to wait for me in the cot while I went out to get some coffee. We organised
the drips and lines such that she could sit on me next to the cot and read
books, look at photos, draw etc. We had a little midday lie down with the
curtains closed and the lights off. It was logistically challenging to juggle
that and looking after Libby (thank you family and friends for all your
help!) who was still being breastfed. But it was in some ways really easy just
focusing on caring for Sarah-Hope. Much more so than constantly carrying a sick
child around all day, while still trying to care for the other one and do the
usual chores at home. Because we spoke so much, her language developed beautifully
while she was in hospital which was great.
A fresh wave of reality – sickness
and dependence
Even though
Sarah-Hope was sick, I was thriving. I get into this ‘caring for sick child’
mode. I think it is because when we prepared for Sarah-Hope’s birth, we were
expecting her to be sick and dying – and I had such a sense of the privilege of
caring for her and was determined to make the most of each hour or day of life.
Since that was my starting point and expectation for her life, I don’t find it
tough to go back there. I actually love the simplicity of the moment, the focus
on love and care and celebration. But now that we are parents of two children
who we expect to have full lives ahead of them, sickness comes at the expense
of developing for the future. I quite enjoy putting all my development and
progress goals aside and focussing on her – but it does come at a price. About
five weeks after Sarah-Hope was discharged from hospital, she got sick again.
Now knowing what the problem was, we could manage it at home (stomach tube is
such a bonus!). But it was another three and a half weeks of carrying
Sarah-Hope around, in which she never stood up or took a step, appointments
were cancelled, Libby getting less attention etc. Sickness, medication and its
side effects, juggling stopping for the sick child while life still needs to
continue for the next child… these challenges seem new to me. When I consider
the losses we face with Sarah-Hope’s challenges, I had counted those related to
disability. I hadn’t factored sickness into her future. This hospital incident
was the first time in her life that the doctor ever said the words ‘this immune
system of hers’ to me – even though she had a difficult start to life, I had
not really put her in the ‘low immune system’ camp in my mind (it was probably too much for me to deal with at the time). This experience may be isolated to
these 6 months – or it might be a more regular part of our future as a family.
We are not far enough down the road to tell yet. But I felt as though I needed
to grieve this new reality… that because Sarah-Hope’s bone marrow is not 100%
healthy, it means that she doesn’t have the immune system other kids have. She
is more vulnerable than others. Sickness could be a more regular part of our
family life than I thought. That period of denial is over.
At about the
same time, Sarah-Hope turned 30 months. This felt really significant – she was
two and a half! I have my hands full with my two and a half year old and my one
and half year old. But there is more to it than that. Yes, sickness means that
dependence increases. But also, most two and a half year olds are way more
independent than Sarah-Hope is right now. Libby is growing up fast. So is
Sarah-Hope – but realistically, I will be doing certain things for Sarah-Hope
for a long time still. Some things are not going to look much different in six
months time. Some things are not just a phase, a stage, something to push
through. It feels like another wave of grieving and accepting is necessary.
Every mom does everything for babies and young toddlers – but right now it is
really dawning on me that some things are not going to get easier.
Sarah-Hope’s ‘beautiful play’
One of the
most heart-warming things I have seen this year is Sarah-Hope start to really
play. A friend of mine, who is an OT, said to me “I am blown away by Sarah-Hope
and how beautifully she plays”. The nurturing side of Sarah-Hope has really
come out with her dolls – she feeds (including breastfeeding!), changes
nappies, carries, pushes them around in the pram, puts them to sleep… it is
adorable.
She also
chats away on the phone, and does plenty of saying ‘bye’ and ‘hi’ and ‘see you
later’, opening and closing doors and finding little houses for herself in
different rooms, cupboards and under tables etc. She absolutely loves playing
with dolls houses, and manipulates the toys really well. Two of her tricks
include moving a toy from one hand into her mouth and then into her other hand
and using her cheek to help reposition something in her hand. And as the
control of her body increases, she can get herself into better positions to
enable reach.
Sarah-Hope
and Libby can also play together really well. It is so sweet to see them high
five, low five, rough and tumble with Dad. Libby is very active and gives
Sarah-Hope all sorts of fun exploration ideas to try. Sarah-Hope is also often amused
by her sister, and will laugh saying “baba funny!” She is, however, aware of
Libby’s movements and often prefers to play on the kitchen counter top when
Libby is running around so that she doesn’t interfere with her careful,
constructive activities. As a result, I loved hearing her say “me miss baba”
when she was in hospital. On another occasion, Libby fetched something for
Sarah-Hope who exclaimed “baba help me!” How profound and apt for the future.
Fun and Frustration
Sarah-Hope
is measured, focused, a rule keeper (she lets her sister have it if she sees
her breaking the rules!) and is developing into a happy child. How wonderful to
hear her say “me happy!” Here are some more pictures of her at her happiest:
Sarah-Hope,
as any two year old would be, is experiencing a lot of emotion. The frustration
of being misunderstood or not being able to do something she wants is shared by
all toddlers. But hers are beginning to increase as her short arms mean certain
tasks that she wants to do will always be more difficult. One of her frustrations is trying to load a
spoon or fork – and keep the food on it until it gets to her mouth.
Sometimes
she gets so frustrated that she stops eating altogether, which is obviously not
ideal. I have been teaching her to ask for help (and realise that I then need
to be ready to give it to her!). And I have also been trying to coach her in
controlling her temper – it is the balance between validating her feelings of
frustration but also requiring her to make good choices regarding behaviour.
Sarah-Hope
will be three years old by the end of the year. I am enjoying the innocence and
freedom with which she lives in her body. It is beautiful. She has not yet made
the connection that she has short arms and that is different to others, but I expect
that to come soon. I am hoping that the confidence, creativity and liberty I
see in her at home will continue to mark the way she conducts herself.
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