back to territory life

by Tania
8 weeks after Mia’s birth we eventually left Adelaide for Alice Springs.
We were put into isolation to make sure we didn’t bring any bugs with
us from Adelaide. Here we met the Paediatrician who would be taking
bath tine in hotel in ALice

over Mia’s care. He was excellent and was always willing to listen to my

concerns, silly questions etc. He also gave Mia the chance to prove
herself and never told us what we should be doing. Of course he
advised us but then let us decide and try other ways first.
He ended up leaving Alice to take up a job in Melbourne, for us that is

a great loss, but a gain for the families in Melbourne.

sleeping in hotel with sister JOrdan!
We returned to Tennant Creek to show Mia off and to pack up the house.
Josh had his transfer to Alice and I decided to take 6 months off and
concentrate on Mia. I was linked in with the local health clinic and the
children’s services team there. We started seeing the physio, occupational
therapist and speech therapist regularly each fortnight, and continue to
do so to this day. I have seen Mia get stronger with her legs and her
neck. Still we don’t’ know what she will do in the future whether she will
walk or not- but now that doesn’t matter. It’s funny that the first question
people ask when they find out Mia has Spina Bifida is “will she walk?”
People place such importance on that. I know it certainly helps in life but
there are many people who have lost that ability and have gone on to be
successful and enjoy life . When people ask me this question I am
tempted to say “who cares? If she does, good, if she doesn’t it won’t stop
her doing whatever she wants to in her life”. That is how we are bringing
her up. She will try and do all the things we do. Her first camping trip was
when she was just 3 months old and hooked up to oxygen. I’d love to see
her conquer all the things people say she can’t, shouldn’t or wouldn’t be

able to do.

our special friends Mon and Mel with baby Cooper
staffroom at tennant creek high for morning tea
our last dinner with dear friends before leaving tennat for good
Mick and MIa
I found a support group for Special Needs kids in Alice and decided to go
along. This was one of the best things I did. It was so good to meet other
mums and kids going through similar, if not worse situations than me. We
all had sad stories to tell, and yet all of us were so happy with our
precious little ones, no one felt sorry for themselves. I feel sorry for Mia at
times when I think about the future at school. Being a high school
teacher I know how mean kids can be. I hope she can find a way to
overcome this if it happens to her. At this group each week we got to
talk, the kids played and there were guest speakers, we did baby yoga
and there was also an Occupational Therapist there to work with the kids.
I really miss that group now I am back at work. I will never forget one
trip we went on as a group to visit the local special needs school- Acacia
Hill. This school and the staff are amazing. But what really got to me that
day and has stuck with me ever since is that for all the problems these
kids have they are always so happy. They have every right to mope and
feel sorry for themselves and complain about life, but they don’t. I get
annoyed now when my students are too lazy to put pencil shavings in the
bin as their legs are tired, I try to make them realise that at least their
legs work. Mia has made me see things from a completely different point

of view now.

JOrdan and MIa at the special needs playgroup
We met some great nurses and doctors in Alice, Mia ended up in
hospital 2 times for respiratory illnesses and once for feeding
observation. Again, there are the nurses who really take an interest in
Mia who I feel most comfortable with. I don’t understand why some
nurses work in Paeds when they can’t seem to even say hello to the
children. It takes a special person to work on a kids ward and we met 3
who really stand out in my mind -I will always remember Crazy Mary,
Jayne and Claire, nurses who actually took the time to get to know Mia
and myself and made her feel loved, wanted and normal. If we saw
them out in the street they would always stop and talk to her, ask how
she is. That’s the caring attitude a parent needs around their special
child.
Mia also had special team who worked with her every second Friday in
Alice. They were her physio Raf, OT Jane and Speech Pathologist Megan.
All these people have again made me feel like everything is okay and
they are so positive and loving towards Mia. Mia has worked with Raf
since we moved to Alice and its funny to watch them together- I am
sure Mia knows its time to work when she goes to physio and sees Raf,
she all of a sudden decides it is time to rest! She could be chatting in
the car driving in, but as soon as we go into that therapy room and lie
down on the mat, she thinks its sleep time, and lets us know when she
thinks she has enough of her workout as she lets out her big deep
sigh!
I’m hoping Mia will be with this team for a long time yet and they see
exactly what she can do in the future. Staff turnover here in the Alice is
high, so who really knows. But I owe alot to this team and thank them
immensley for their hard work with Mia and for teaching me what daily

exercises she needs to develop to the fullest.

dad and Mia
mia in her bumbo playing
elsa, jordan, mia and ella
loves her bath time
happy baby
special needs playgroups christmas party in Alice Springs

2 steps forward 1 back

by Tania
Mia had been attached to oxygen all her time in hospital so I could
never really go far with her. It was nice when all her bandages and
dressings came off. This happened all on one day. The Doctors came
in and said off with the dressings and out with the canula in her head
and also the NGT.
This was great as I could finally give her a proper
bath and it was promising for her feeds. We only had 2 tubes left to
get off her, and then I could see what my little girl really looked like!!
I remember many days where her oxygen would be turned off one day
and then when I came out to her the next morning it would be back
on. I felt very disappointed each time this happened. This also
happened with her NGT. Mia’s heart rate used drop at times when she
would feed via the bottle or the tube which was very scary, due to this
the oxygen and continuous feeds were always hooked back.
I knew she could beat this problem as she had overcome so much
already. Every challenge the Doctors put to her she proved them
wrong. Many times they doubted her ability to do things and so
ordered tests, scans etc but each time the tests came back showing
she could do it. This happened with her swallowing and breathing
which we were told she would never do, even when she was

swallowing it was doubted that she REALLY was!!

Coming off the oxygen was hard for Mia. It seemed she was addicted
to it. We weaned her off it but she wouldn’t give up that last 0.05! In
other words just a whiff, hardly anything. She ended up having the
Respiratory team come to look at her and they said that as Mia was
born 5 weeks early her lungs were very small, normally developed just
tiny. We had to be very careful of any respiratory illnesses as babies
with small lungs pick up ‘bugs’ easier than babies with normal sized

lungs. This was another reason we had to be near a major hospital. He
said they would grow fine in the future. To find out what was going on
with Mia’s love of 0.05 oxygen, he booked her in to have a sleep study

done. They attached probes all over Mia’s body and head and
observed her overnight. This tested how much oxygen and CO she
needed. When the results came back it showed that Mia had episodes
of apnoea throughout the night. Due to studies into the amount of
oxygen a baby needs during the first year of life to help intelligence, it
was decided that for 6 months Mia would be on .25 oxygen, day and
night. We had a small 7kg oxygen bottle for travelling and at night she

was hooked up to a machine.

Mia had issues with feeding from birth. She was a petite feeder
and as I write this now we are in hospital trying to get her to feed
on solids. Throughout her short life so far we have tried about 5
different formulas, adding calories, adding thickener, etc. She used
to have very bad reflux, which she has now got under control.
There has been alot of talk for months about putting a PEG
(feeding tube) in her tummy. After a lot of research and talking to
mums of kids who have one, my husband and I don’t want this for
Mia. She looks healthy and is very happy- which is the main thing
to us. There is no point following the ‘normal’ growth and
development chart as obviously kids with Spina Bifida, Arnold Chiari
11 grow differently.
As every other challenge put in front of her- she will overcome not
liking solids.
We have been seeing a Speech Pathologist and have now started
to play games with her food. I get her sisters to help here as I
have issues with mess, and getting my hands covered with jelly
and custard etc. However, I must say that even after just a week
Mia is more interested in her food.
I am also taking her to Adelaide in a week to dicuss the PEG with
the Gastroenterology team. I am still determined she is not having
it! Whilst there we will catch up with her other specialists and have

a CT and ultrasound done.


our time in PICU

by Tania
Mia went through many challenges during her 2 weeks in PICU
but every challenge the doctors put to her she came out
fighting and won every round. I was so proud of her.
I spent a lot of time with Mia in PICU. I wasn’t able to walk yet
comfortably, so Josh always wheeled me around in the
wheelchair. It was very sad being with her, but I was just so
happy each time I went in to see she was still alive. I was so

worried that each time I saw her it would be my last.

It was decided that on day 4 of her life she was to have surgery
to close the myelomeningocele. The neurosurgeons were
fantastic. I must say they were very serious to start with -
however, by our 7th week at the hospital, we were joking
together. It was explained that Mia might have to have a skin
graft if they couldn’t close the skin in her back. I was a wreck
when it was time for her to go to theatre. Our anaesthetist was
very caring and understanding, however, I will never forget his
words as she was ready to go,” say your goodbyes” which of course
made me cry even more as I leant over to tell her to hang
in there and fight and give her a kiss. I know he didn’t mean it
how I interpreted it- to me it was as if I would lose her in
surgery. He saw how upset and worried I was, so he updated
Mia’s nurse on a few occasions, who immediately informed us of
how she was going. Everything went extremely well and no skin
graft was needed. I was so appreciative for the updates over

the 4-5 hours she was gone.

I remember times when one specialist would be happy with her
progress and Josh and I would be feeling positive but then another
one would come in with a distinctly different tone and say ‘but we
don’t know if she can swallow she needs to clear her secretions no
one has heard her cough we don’t think she can gag etc” Of course
this was devastating news for all I could think about was- what
does this mean for her?
I was a mess again. The doctors didn’t’ sound too positive about
Mia being able to do any of these things. They did not know the
determination and strength of my little Mia- she fought to come into
this world and has fought ever since, so needless to say she proved

them wrong on each account!

It’s the simple things parents need to hear to keep them going just
to hear a doctor or a nurse say your baby looks good today
did a lot for me . It put that smile on my face, and made me feel
positive about the situation. That she would eventually get out of
PICU and one day home. I needed those days – and those
comments, instead of the negative ones all the time from Drs

telling me she can’t do this she won’t do that etc.

Babies with Spina Bifida have problems with their body
temperature- and Mia was no different. She was rugged up
in a heated cot; with a thick grow suit, 3 blankets and either
1 or 2 beanies on! We used to say to the nurses that she was
just simply not used to the cold Adelaide weather- she was a
Territory baby after all, she was used to the 40 degree heat!
These problems caused more stress for me when it came to
feeding. When we got Mia out for bottle feeds sometimes
her temperature would drop and she would experience
Bradicardic episodes, this is where the heart rate drops too
low. Most times Mia bought herself out from this and the
heart rate returned to normal, however, on one occasion she
didn’t and the nurse had to stimulate her. This was a
nightmare for me – saying goodnight to her each night not
knowing what I’d be facing the following morning when I’d
arrive at PICU. Due to these episodes Mia went back onto
some Nasal Gastric tube feeding so she wasn’t’ coming out of

her warm cot so much.

When Mia was first born the Doctors thought she had a seizure so was
put on medication (phenobarb) to stop them. The amount of
medication was worrying to us as Mia seemed very dopey all day. After
a couple of weeks the Doctors discussed this issue and tested the
levels in her system. They found the levels were too high and so
decided to take her off it. After a week she was put back on a lower
dose- even though she hadn’t had a seizure. Then Mia decided she
was going to sleep all day and be awake for the nurses at night
“partying with her fellow Bay 7 babes”. I found out that she was given
her medication in the morning, so as this makes patients drowsy I
asked her doctor if it could be given at night so she was awake
through the day. Mia used to twitch a lot in her sleep as did my other
girls so whether Mia actually ever had a seizure or not will never be
known, but her rehab doctor who eventually took over her care
doubted that she was having them and so finally she was weaned off
the phenobarb over 5 days. This was great news for me as I felt she
would be more alert and wouldn’t have a drug in her system that

wasn’t necessary.

me and my mother in law beckie
The day finally came where Josh, Beckie and the girls had to go
home. This was very hard for me to say goodbye to them – not
knowing when I would see them again. We had no idea how long
Mia would be in hospital for, we expected to be there for a few
months. I was also concerned that I would be there all alone if
something went wrong and also making major decisions. Would I
cope alone?
Josh went back to Tennant and tried to arrange for job transfers to
Alice Springs. We needed to be closer to a major hospital and
airport. We definitely were not going back to Tassie. We hadn’t
achieved what we came to the Territory for- that was to help and
teach our Indigenous peoples. Of course we had Mia to think of, and
we did. Josh and I both thought we could do it all, and to this day
we are. We also didn’t want Mia wrapped in cotton wool, she is
going to live her life just as any other kid, and that’s how we treat
her.
I moved into the ward with Mia and basically spent my days and
nights sitting with her, feeding, bathing etc. I didn’t like leaving her
side. Occasionally I would walk into Rundle Mall and get her some

new clothes, toys- but not often.

our new bed on the ward
I had my first mothers’ day with Mia in hospital. I woke up to a choccie
muffin and a beautiful message on her cot from her. (One of the night
nurses was busy throughout the night organising all this) Josh had left a
present for me which I opened with Mia- it was a gold mother and daughter
necklace which Mia will get half of when she is older. I got to spend the
whole day cuddling Mia and watching her sleep. What a perfect way to

spend the day.

 

 


21st April, 2008

by Tania
I woke up at the sound of our alarm. It was 6am on Monday and it was
time to get up and get ready for work and the girls ready for school. I
lay there for a little bit, psyching myself up to roll out of bed. It was
such an effort now to move. Finally at 6.30 I thought I had better make
a move and do the normal morning routine- however this was to be no
normal Monday morning. I went to get out of bed when there was a
huge gush of warm fluid between my legs. I stayed where I was as
every time I moved more came. I nudged Josh and told him my waters
had broken, still half asleep he lifted the doona and saw the sheets
were saturated and could feel it on his leg. I don’t think he believed me
until he saw it for himself! He sat up and placed his feet on the floor
and then walked out the room. I didn’t quite know what he was doinghe
was so calmtoo calm. Little did I know that he wasn’t calm and he
didn’t know what to do. He likes to know what he is doing, stick to
plans. Our plans were to go to Adelaide in a few weeks to wait it out
before our caesarean. That was our plans and he was calm about that.
I remained in bed as I was too scared to move for 2 reasons; firstly I
didn’t want any more water gushing out and secondly I didn’t want this
baby to come out as I didn’t want to say goodbye to her yet. I wasn’t
ready for this pregnancy to be over. I started talking to our sweet little
girl telling her to hang in there; we will be okay and that we had things

to do together she couldn’t leave me.

Whilst I was pleading with our baby girl Josh was outside having his
morning coffee and smoke! He then proceeded to message his mum
in Tassie to find out what to do. She wasn’t there- being a teacher
herself she was already in class and Josh forgot about the time
difference! We didn’t have the Tennant Creek Hospital number on
hand as our baby was going to be born in Adelaide! Josh called our
friend Mel who was the nurse at our school who told him slowly and
calmly “take Tania to the hospital and I’ll ring ahead and let them
know you are coming.” I was always amazed at how Josh had to ring
his mum and then our friend to ask what to do- couldn’t he have
asked me? Wasn’t it fairly obvious what we needed to do? GET ME TO
THE HOSPITAL!!!! Our last child Jordan was overdue and a planned
induction, so I suppose this was a bit out of the norm for Josh.
I was still in bed having regular and intense contractions. I got up and
changed my pj’s and waited for Josh to get the kids out to the car. He
then came and helped me out – with a towel between my legs I

walked hunched over to the car, still with water gushing.

We arrived at the Emergency entrance around 7.05am. I was
placed on a bed just inside the door. The kids were taken to watch
TV and later they told me they got breakfast and played the play
station- at least someone was having fun! My contractions were
very intense so I was given gas to suck on. Eventually I was
checked by Molly our midwife and then was given some medication
to slow the contractions and turned on all fours. This was a position
I wasn’t too keen about showing the medical staff in a remote part
of Central Australia!!!
The Royal Flying Doctors were called and were on their way and
the Alice Springs Hospital was also notified about the delivery. I had
no idea where Josh was through all this- I was in too much pain,
screaming, sucking on gas, chewing tablets to stop/slow
contractions- nothing was working, our baby was ready to come
into the world.
I remember taking a look at my watch to see it only said 9.15am -
the Flying Doctors were going to be a couple of hours away. I let
out a few expletives and cried that I couldn’t do it anymore, I

couldn’t last that long.

Josh had met Mel and Monica in the hallway- they had come to take
the kids for us and Mon had given Josh a nice baby blanket for our
precious girl. (They could hear me quite loudly so decided not to
come in to see me!) We were so lucky to have friends like them.
Josh got them up to date of the birth events throughout the
morning. When he came back into me he saw things were really
happening. Molly had now realised that contractions weren’t

stopping and this baby would be born in Tennant Creek!

Tennant Creek Hospital doesn’t do births – let alone births of babies

with Mylomeningocele and Hydrocephalus.

I was in a lot of pain and then last thing I remember was
holding a nurse’s hand and her telling me to grip it as hard

as I liked.

For the next 2 hours I have to rely on Josh’s observations:
“I as an interested bystander, watched as a blur of activity went

 

on around me. I couldn’t help but pick up on part of

 

conversations and observe the actions of the nurses on hand. It

 

was obvious this was not a situation they were used to. Molly

 

had her glasses on the top of her nose investigating the

 

diameter of the cervix she realised that birth was imminent. She

 

began calling orders for various items, pointing in every

 

direction and glaring over the frame of her glasses. Someone

 

tripped over an electrical cord; another reached down to adjust

 

the bed and a glass sample vile fell out of their pocket and

 

smashed on the floor.

 

It was clear from Tania that she was in the full throws of labour.

 

Pain relieving medication for childbirth was in short supply at

 

Tennant Creek. They had administered Pethidine; given her the

 

gas to suck on and finally they gave her a hypnotic drug so she

wouldn’t remember what was happening.

It was at this time that I met Terence. I received a pat on the

 

back and turned to talk to a person who, to my mind looked 18,

 

but told me he was a doctor- so he may at least be 24. He told me

 

that the baby’s head was too big to fit through the pelvic bone. To

 

reduce the baby’s head they needed to perform a procedure,

 

inserting a needle into the skull and draining part of the

 

hydrocephalus. I initially protested against him performing such a

 

risky procedure, but he assured me it was necessary to save

 

Tania’s life- he conceded that it would lessen the chances of Mia,

 

which he already rated very low. Tania, I was told, could rupture

 

her uterus and bleed to death. Eventually I consented to the

 

procedure.

 

I began to dwell on the likelihood that Mia wouldn’t only be born

 

in Tennant Creek but may well die there as well- before any of the

 

doctors and specialists that had seen her in Adelaide inutero had a

chance to do anything.

Molly was waiting at the end of the bed encouraging Tania to push in time

 

with contractions. She could see the top of Mia’s head emerging the Doctor

 

who came with the RFDS entered the room at 11.00am. Shortly after at

 

around 11.15am Molly gained enough of a purchase around Mia’s head and

 

then slid her out onto the sheets. Mia lay on her back, breathing for herself,

 

while Molly attached pegs in preparation for the severing of the umbilical

 

cord. In her initial haste she attempted to cut with what turned out to be

 

clamps. Retrieving the scissors she cut Mia free from her mum and for the

 

first time she was on her own ready to show us what she could do. It was

 

around this time Tania became more alert with the drug wearing off. A

 

nurse held Mia up to her between her legs and said,” Here is your beautiful

 

daughter”.

 

Immediately she was whisked away around a corner across the hall where a

 

heated crib was ready. When they placed her on the crib I caught a glimpse

 

of her back. It appeared a symmetrical, elliptical shaped wound, about the

 

size of two 50cent pieces. The inside of the wound looked like dark red

 

muscle tissue. The outside was just normal skin surrounding it. At first it was

 

horrific to see because I thought I was looking into the baby’s insides- the

 

back of the lungs perhaps or her heart. Upon closer inspection it didn’t

 

seem that bad. The nurse wrapped Mia’s abdomen and back in glad wrap

 

to cover the lesion.

 

Mia was breathing well by herself and was proving she was a fighter.

 

After Tania was stitched up she was flown with Mia to the Alice Springs

 

Hospital. I collected the kids from Mel and Mon and after dropping in home

 

to pack bags (and omitting many items) we drove down to Alice to meet

them.”

I find it really hard hearing all that happened through the
birth- to lose 2 hours mightn’t seem like much but it is
huge, then to find out that you could have died along with
your baby was one of the hardest things I have ever heard.
I can only imagine what Josh went through and the
thoughts that went through his head at that time. My God,
what a decision to have to make! I owe so much to Molly,
Terence and the team who helped us that day in Tennant
Creek, they are somewhat heroes to me. Saving both my

daughter and myself and not giving up on either of us.

Once we arrived in Alice, Mia was taken through to the Special care
nursery and I was taken to a room on the ward. Adelaide was notified of
the situation and they were sending a retrieval team the following day to
collect her. I had a rest until Josh and the girls turned up later that day,
we then went to the nursery to see her.
It was extremely upsetting, I just cried and cried. My poor baby girl with
all these tubes over her. I just kept telling her in my mind to stay with me
and keep fighting. The nursing staff in the special care nursery were
fantastic. They were so caring and did everything they could for her. I
went back to the nursery a few more times that night and had quite a lot
more tears.
I then had a big rest until I heard the door to my room open and a
doctor was standing there at my bed telling me Mia had stopped
breathing for 1 minute- my heart sank, surely she had got through the
birth she could get through anything. A nurse manually ‘bagged’ her and
so in the end they decided to ventilate Mia automatically. I thanked the

doctor for letting me know and I was just happy she was still alive.

The next day it was all about organising both of us to go to Adelaide.
Josh had spent all night trying to change our tickets we had already
booked to Adelaide. Of course this wasn’t simple! I had to make a
decision whether to stay with Mia and risk the chance of getting on the
plane with her or going early with Josh and the girls and meeting Mia
there. If I stayed to see if I could get on the retrieval flight I could have
missed out and not got out until the next day. I couldn’t risk that.
I couldn’t leave my baby in Adelaide all alone.
So I went with my family in the afternoon and Mia came out that night. I
arrived at the airport with no mascara (one item Josh omitted from
packing) and my drip still in I looked like death warmed up. I was
concerned that I wouldn’t be allowed on the plane- perhaps they
thought I was a druggy or something! My eyes were swollen from the
tears and they weren’t stopping.

It was the longest flight to Adelaide I have ever had.

We met Beckie at the airport. Beckie saw me and I was crying of course -
she just hugged me and I let even more out.
We made our way to the apartments where we would be staying. We quickly
dropped off our stuff, I packed a bag to take with me to the hospital as I had
to stay on the post natal ward for a couple of nights to make sure I was okay.
Josh and I headed across the road to the hospital to see if Mia was there and
to admit me. She hadn’t arrived yet so we went to the cafeteria for coffee
and then back to my room. I was worried that something might have
happened on the flight and I wasn’t there for her. We went back to PICU
again but she still hadn’t arrived so they said they would contact us when she
got there.
Finally around 8.30pm Mia arrived at PICU. She was placed in an isolation
room incase she bought infections with her from the Alice Springs Hospital.
She was fully ventilated and her vital signs were good. It was so good to see
her again, although sad seeing her hooked up to everything and not knowing
what was going to happen to her.

I just cried whilst I looked at her and touched her ever so gently.

My Mia was finally in Adelaide and she would get the chance to see the
specialists and continue her fight.
Being born in Tennant Creek had proved she was a fighter- Round one

was over but there were many more rounds to come.


Back to Tennant

by Tania
Life returned to normal back in Tennant. We both went back to
work and whilst I was working I felt like this pregnancy was like
any other I had had. It was when I went to bed each night that it
hit me. This was not like any other pregnancy I had had; this
pregnancy might die at birth. I cried myself to sleep most nights,
very quietly as I didn’t want Josh to know or worry.
We had to discuss funeral plans, but that was too hard. We
couldn’t get any furniture, clothing for the baby as we didn’t know
what was going to happen. I found this so hard to deal with.
Being heavily pregnant with no nursery, people asking if I was
prepared and have everything I need and me lying to them and
putting on a smile.
I did feel like I had to buy one thing for her – an outfit to wear at

her funeral. So once I had that I suppose I felt I was prepared.

My mother in law Beckie was very supportive through this time. She
too is religious and was praying daily for us and the baby (as were lots
of people). We asked Beckie if she would take time off work and come
over to Adelaide to look after the girls whilst I gave birth to Mia. Of
course she said yes, she would have done anything. I wanted the girls
there incase things went bad, I wanted them to say goodbye in

person.

I remember Josh coming in to our bedroom once, I was on the bed
looking at funeral things on the net and during our conversation said;
“I think you should prepare yourself for the opposite, I think you

should prepare yourself for her living.”


In Adelaide..

by Tania
Josh and I headed to Adelaide leaving our girls with our good friends
in Tennant Creek who offered to look after them while we went to
learn what might happen at and after the birth. Once in Adelaide we
settled in to The Greenway Apartments just across the road from the
hospital- this was soon to be our home away from home the next time
we arrived in Adelaide.
We were contacted by  the Maternal-Fetal Medicine/ Antenatal Diagnosis and
Counselling Service Coordinator atthe Women’s and Children’s hospital. She had
arranged all ourappointments for our time there and would be our point of
contact from then on.
Bec the Coordinator was kind and caring; she had a soft voice and really
seemed to understand what we were going through. These were our
appointments whilst in Adelaide; some went well and had positive

results others were like being in hell!

17/3/08 @ 9.30am
2nd opinion USS +/- amniocentesis
Women’s Ultrasound Department
Here we met Dr T who pretty much gave us the same opinion as the
2nd doctor in Alice Springs. This was disheartening; however he
could talk us through all the options available to us in Adelaide as we
had decided to keep the baby. He was concerned about the size of
my stomach and we found out there was a lot of fluid around the
baby, which he was concerned about and also made me very
uncomfortable- I was huge at this stage! He arranged to do a

procedure on the 19th where he would take out some fluid.

me (after 2 litres of fluid removed) still looking the similar size to the balls in rundle mall!!!
Josh with beautiful adelaide in background
18/3/08 @ 11.30am
Fetal MRI scan
Paediatric US Dept
An MRI scan was the last thing I wanted to do. But for my baby I would do
anything. I hate being in enclosed small spaces, let alone the size I was , lying
on my back for what felt like hours. My belly was nearly touching the top of the
machine, I was crammed in so tightly. I kept my eyes shut so I didn’t have to
notice how small an area I was lying in..
18/3/08 @ 2.45pm
Paediatric Rehabilitation appointment
This was the worst appointment we had in my opinion. I sat in the chair next to
Dr. M’s desk and just cried- I was a mess. I couldn’t look at him as he was
describing what physical abnormalities and limitations my baby would
have again, if she survived. Josh was asking heaps of questions, I got to the
point where I just wanted to get out of there. I understand he needed to tell us
exactly  how he thought it would be based on other cases and research but he
was so blunt. Didn’t he realise I was her mother; she was still alive inside,
listening to all this negativity?
At times I think doctors need to experience things  themselves so they know how to tell parents bad news.
I will never forget how I felt in this appointment.
The interesting thing is, after feeling that way in March, come April I ended up
liking this Doctor, he visited us in PICU when he heard she was in the hospital,
and I must say he was shocked. I was honest with him and told him she proved
him wrong- he agreed. By the time Mia went to the ward he was the one who

took over her care.

I trust this Doctor immensely now and value his opinion. I know he had
to put things as he saw them- thats what we went to Adelaide for- to
hear what might be from the experts. But as a mother, it is hard to hear
and accept those views. He still took care of Mia when his team flew into
Alice when we lived there for check ups. Recently, I caught up with him and
again we discussed that first appointment- he too remembers exactly what it
was like and how much of a mess I was and how I was lucky to have my
husband there.
19/3/08 @ 11am
Paediatric Neurosurgery appointment
I never made it to this appointment as I ended up in emergency! I had
2 litres of fluid drained from my stomach, this made me feel lighter and
I had less of a waddle as I walked. On the way to our next appointment
I had to stop as I had contractions, they were painful, I couldn’t walk, I
started crying and found the closest table to lean on whilst Josh went to
find a nurse. I was warned that this could happen as a result of the
procedure, but we had to go through with it in a hope that it would
postpone early labour. A nurse came with a wheelchair and off to
emergency I went whilst Josh went to see Dr E by himself. After a while
my contractions eased and I was allowed to go. I couldn’t imagine how
I would cope if they didn’t ease and I gave birth that day- our baby

would have had a very slim chance of survival then.

19/3/08 @ 2pm
Neonatology appointment
I really appreciated how Dr. J put the situation to us. He understood it had
been tough so far listening to Doctors tell us negative situations. He on the
other hand just chatted with us about our 3 other daughters, our work and
what our thoughts were in general.
We discussed organ donation, as this is something Josh wanted if she didn’t
survive, but he said this doesn’t happen with babies’ organs.
He put things to us simply- ” we will know at birth which way to go as Mia will
tell us. There are 2 paths she could take; if she comes out crying/screaming
like a normal baby then we pursue treatment and surgery. If she doesn’t
and seems to be struggling to breathe on her own then we will make her
comfortable and let her go. “  This is what we needed to hear as we had
already decided that it wasn’t our right to end her life.
He also made me feel positive and that I could do this role as a mother of a
special needs child and that our 3 daughters would be the best physios our
baby could have.
Of course I cried at this appointment too but I left feeling okay about things,

although there was still the issue of a funeral deep in my mind.

19/3/08 @ 2.30pm
Maternal Fetal Medicine appointment
Women’s Outpatients Dept.
Here we just caught up with Dr. T again and talked about dates of
needing to be in Adelaide incase I go early. We summarised everything
that had been told to us over the few days, how we felt, any issues or
questions etc. It was a very full on and emotional few days. I was glad
to be going home to get back to work and normality where my baby
was just like any other, floating around, kicking me, making me

uncomfortable and not letting me sleep.


her name…..

by Tania
I remember Josh saying to me once that we need to think of
names for our baby girl. I wasn’t ready at that time to do that, but
it wasn’t long after that conversation that I felt like our baby spoke
to me and told me what her name should be. I know this sounds
weird and it is really hard to explain, but she told me her name was
Mia.
I am really fussy when it comes to names; I usually take the 9
months to agree on one. (As a teacher, there are so many names
which remind you of students, naughty and nice, so that doesn’t
really leave you with many to choose from!) Then I have to put the
first, second and last name together to make sure that it sounds
okay and that they won’t be teased later in life at school.
I honestly could not think of any names at all for our baby- every
time I tried to think or look at a baby name book, Mia kept telling
me what her name was. So Mia it was.
One day doing our 5 hour drive from Tennant to Alice Springs, I
spoke to Josh about her name and told him what had been
happening and how I thought she was telling me what it was to
be. He was happy with Mia as her first name and as I had ‘chosen’
the first name he was to choose the second name. This was easy
for him as he wanted to name our sweet baby girl after his mother-
Rebecca. His mother has all the values that he wants Mia (and all
our girls) to have and she was so much support for us both during
this hard time. I am sure Mia will see it as an honour to have her

Grandma’s name when she grows up.

scenery from tennant to alice

the day after her scan….

by Tania
My husband and I took the following day off school so we
could discuss the situation and research a little bit more. I
stayed in our bedroom, perched up in bed in my pj’s with my
laptop and I just searched and searched the condition,
prognosis, surgeries etc. I emailed my sister in law in America as
through my research I saw that at the Vanderbilt Medical
Center where she had worked had started a procedure where
they were performing surgery inutero closing the lesions on
babies with spina bifida. She spoke to doctors for me to see if
I could do that, however I was too many weeks. I would have
been on a plane the following day if I qualified for that
procedure. Anything to give my little girl a bigger chance of

survival.

I also emailed Josh’s cousin Vanessa who has a little girl with disabilities
to see how she dealt with things, the effect on her other children, did
their marriage suffer etc. Speaking to Vanessa on the phone about
everything was the best thing I did, she had great advice and was the
only person I could talk to about it. I seemed to become a recluse. I
stayed in bed for a whole week, in pj’s and never left the laptop. I
couldn’t – I had to find a way of giving my baby a life. I was extremely
depressed and cried all day, everyday. I found myself not only
researching her condition but also looking for special urns for her ashes
as my husband wanted to have her cremated if things turned out that

way.

I was not only planning for a life with a special needs child but also a

funeral. No parent should have to do this.

Josh and I discussed our options. He is religious and so termination was
NEVER an option for him.
I was just so confused- I didn’t know what to do. I also had so much
guilt from terminating Jakob, although he had a very different condition
- babies with anencephaly do not survive.
On one hand I could never terminate as my baby was moving so much
inside, how could I end that life? She seemed so happy inside; did I
have the right to stop that?
But then on the other hand was I being fair to her giving her a life
where she mightn’t have any quality?
The doctors didn’t give her a chance, just a few hours if that, or if a
miracle happens and she did survive they said she wouldn’t be able to

do anything.
Everyone had an opinion- some very strong and harsh..

How does a mother decide what to do to her unborn

child? How do you know what is best for her?

I looked at my youngest daughter Jordan and felt guilty for not being able to
give her a baby sister to play with. My eldest 2 Ella and Elsa had each other.
Jordan would come into my room and say goodbye to me everyday for that
week as she left for child care, on her way out after her kiss she would say
“you cry mummy” and then run back to give me big hugs. Of course this
bought more tears to my eyes!
After a lot of research and discussion with Josh we decided that we would of
course go through with the pregnancy and let our baby have whatever length
of life she was meant to. Josh contacted the Dr who arranged for us to head

to Adelaide to meet the team at the Women’s and Children’s Hospital.

On my return everyone at school was great, very supportive. People
offered to do my duties so I didn’t have to waddle far in the heat, and
generally were just there for me. I must say this is one of the best schools
I have worked at in terms of support.
I found I could talk to a couple of teachers really easily – Mick and Dave.
Mick sat opposite me in our staffroom and he, Dave and I got along really
well- seemed to be on the same level, we could all share a joke with each
other, but also show support when needed. Anyway, Mick was a new
father and along with his fiancée Monica became good friends of ours.
They offered to have our girls when we needed to go to Adelaide or Alice
again. And later he organised an amazing event for Mia.
I found it hard going out to dinner or just up the street as all of a sudden

there were babies everywhere, alive and had all their movement.

My students would ask all about the pregnancy and feel my tummy.
What could I say to them?
I didn’t tell them her condition, instead said she was sick and
mightn’t survive. They were all very positive telling me that it wasn’t
going to happen.
One boy Randall kept telling me she was going to be cute and
gorgeous! This was all hard to take in, they were young and didn’t
really understand, but I held on to what they were saying and took
on board their optimism (whilst at school anyway).
At home it was different. Josh and I had to discuss what we would
do if things went wrong, where would she be buried? Or ashes
scattered? The tears and depression kept coming. I had already
been diagnosed with severe depression years ago and was taking
medication. I needed something more now, I needed to sleep and
not think, at least for one night.

The doctor gave me Vallium. I got that sleep.


tassie to tennant

by Tania
It was the last week of November, 2007 – everything, it
seemed, was happening and even more was about to happen.
On the weekend (December 1), I would wed my long-time
partner and fellow teaching colleague, Josh Dean, in the
presence of our 3 children, family and friends at Bicheno on
Tasmania’s East Coast.
Jordan and me
We had both been Grade 10 teachers
at Brooks High School in Launceston and, along with our
wedding preparations, were preoccupied with the various
Leaver’s activities and end-of-year administrative tasks that any
school experiences at that time.
We were also waiting to hear from schools in the Northern
Territory regarding possible teaching positions for next year.
Josh and I decided to pursue employment in the Northern
Territory earlier in the year and had registered our details on
the Department’s website.
We received a call from the Principal of Tennant Creek High
School, in the last week in November. Despite the faceless
phone conversation I could sense a warming and outgoing
nature – attributes which I have since found are common

amongst the residents of Tennant Creek.

Our family of five left Tasmania on Christmas Eve, flying to
Melbourne and then to Alice Springs. We spent Christmas and a
couple of days in Alice Springs before catching the Greyhound Bus to
Tennant Creek on December 27.
Our Alice Springs plane…goodbye Tassie.
There to meet us at the BP Service Station when we arrived at 2 a.m.
December 28, were Peter and Pauline Davenport. Peter transported
our luggage in his car while Pauline led us across the road to the
Eldorado Motel where we stayed the night. This totally unexpected,
but much appreciated gesture, was only the first in a series of
helping hands offered to us by the Davenport family and others.
The next day Pauline, along with Linda Dickson, had organised a unit
in which we could stay. Having arrived well ahead of our household
furniture and car, Pauline also helped us out with towels and
bedding and then showed us around the town and the high school.
Linda, the school’s bursar, loaned us some DVD’s to help entertain

the kids.

We made good use of the local pool daily as the weather was in the 40′s. I
was struggling with the heat, was always tired and slept through the day.
This wasn’t normal behaviour for me so I put it down to the stress of the
move and starting a new job in a town very different to where we had
moved from. It was really starting to annoy my husband though, he was

keen to get out and explore and I just didn’t have any energy.

Jumping Jordan…
Being pregnant just didn’t cross my mind. We had finished
having kids and I had just had cosmetic surgery on my tummy
and breasts- getting it all back in shape after having kids!! I was
ready for a new lease on life.
Just months before my surgery I had a miscarriage and my
period never returned. I hadn’t worried about it till I noticed my
waist thickening and my tummy didn’t seem as slim as it was
after surgery. (I know now why my wedding dress was a little
tight on the day!) I started thinking maybe I could be pregnant
or maybe I had early menopause. It wasn’t until we went to Alice
for a weekend that I thought I should do a test to rule that out.
Well it didn’t rule it out but instead confirmed it. We were in
shock for the whole weekend. Next came the question…how far
was I? What did this mean to my new job?
We didn’t know who to turn to in Tennant, there wasn’t a
doctor’s surgery- well there was but they only flew in at certain
times of the month to see patients. So I made enquiries and

booked in to see the midwife at the hospital.

As we would find out later the main trait of the people of Tennant

 

Creek has to be their friendly, outgoing and supportive nature.

They truly are an amazing community…

Road to and from Tennant

The story of MIA…

by Tania
“We can terminate today”
That was the doctor’s response.
It was less than half an hour before that I had just been told my baby girl
had severe Spina Bifida and Hydrocephalus.

This is her story…..

My husband was with our 3 other daughters in the car park of the Alice
Springs Hospital. We had just had a scan and took the girls in with us to see
their sister. As we had come from Tennant Creek- a 5 hour drive away, I said
I’d be ok to go to the Drs Office and get the results alone while he took the
girls outside for a run around. Little did I know what I was about to be told. I
had already had an idea what was wrong as I saw the ultrasound report on
the midwife’s desk and as I had previously in 1996 terminated my son at 26 weeks who had   Spina Bifida and anencephaly (doctors recommendations) I understood the terminology in the report.
I called my husband and said he needed to come up to the office. I was in
tears already and as he asked what was wrong all I could reply was “it’s the
same as Jakob”. Of course it was partly different but I was in no state to go
into details on the phone.
I waited for him in the office with the doctor who started to tell me that our
baby would not survive and they could organise the termination that
afternoon. I was sitting in the chair next to the desk with a box of tissues,
pulling them out one by one, wiping the tears dripping down my cheeks. I was
a mess. None of this had actually sunk in and she was talking about
termination.

Whose choice is this hers or ours?

My husband and kids arrived and luckily he was thinking
straight, as he commenced asking questions, and then

finally asked for a second opinion.

The next doctor was very clear with his explanation and let us know both
sides of the story. He informed us of not being able to terminate in the
NT as I was too far gone and I would have to fly to Western Australia if
that was our wish, but also said she had a slight chance of surviving the
birth and that if she did she wouldn’t have a high quality of life. At least
he left it to us to go away and think about a decision and get back to
him. I felt no pressure from him to terminate this pregnancy, unlike the
first doctor. All he asked was that if we decided to go ahead with the
pregnancy he wanted us to head to Adelaide to meet the team who
would deliver and look after her.
We left the office with me in tears and Josh quietly thinking. He was

upset but as most males stayed strong and didn’t show the emotion.

It was the longest and quietest 5 hour trip back to Tennant Creek we
have ever made. I held my tummy and looked up at the sky all the way.
In my head I was talking to my unborn baby girl, telling her to hang in
there, that we had things to do together. She was kicking away,
unaware of what her parents had just been told and the decision which
was ahead of us. I felt she was strong. I was also talking to my parents
who had both passed away asking them to watch over us at this
upsetting time. I do not know if Josh and I had a conversation or not
during those 5 hours.
Upon our return I went straight to bed and curled myself up in the
foetal position and just cried. Why was this happening to me? Was this
punishment for Jakob? Or something else I had done in my life. I am by
no means a religious person but these questions kept going round and
round in my head. I knew I couldn’t go through another labour just to

give birth to a dead baby.

This was so unfair. Life was so unfair.


Mia needs your help, Please make a donation. | Copyright 2017 Please Help Mia | Powered by WordPress | Login