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My nightmare started
about 6 weeks before I was due to have my baby. I had
to have another ultrasound as my placenta had been low
lying and they were very concerned that I may have had
placenta previa. I had a feeling before I went to this
appointment that something was wrong with my baby, but
I had no idea how serious it was and how much my life
was about to change. He started off by looking at my
placenta and all was well there, it had moved up thank
god. He then decided to look over my baby just to make
sure she was growing properly. He started looking at
her heart and continued to look at it at all different
angles and spent what seemed like an eternity. Finally
after nearly an hour he said he needed to get someone
else to have a look. That’s when I knew something was
really wrong with her, far worse than I had imagined.
It was obvious that it was her heart. Another ultrasound
technician came in and started focusing on her heart
and also spent what seemed like an eternity looking
in all different angles as well. I felt horrible, scared
and sick. He then told me that they needed to bring
the doctor in to have a look. She did the same as what
they had done and then gave me the bad news that my
baby girl had very serious heart defects.
I felt so sick
and scared and alone. I wondered what I had done wrong
to cause this to happen to her. I was given an appointment
to go to The Royal Womens hospital to have another ultrasound
and to discuss it with the cardiologist (Dr Rob Justo).
As soon as I arrived home I looked up her condition
on the internet and was horrified by what I read. It
said that a lot of babies with her condition don’t survive.
I knew so far that she had Hypoplastic left heart syndrome,
but there were also more problems, which they would
be able to see better once she was born. I was booked
in to Royal Womens hospital to be induced a week before
I was due. I was meant to have her in Ipswich hospital,
but all that changed when they found her heart problems.
A couple of months before they found her problems, they
discovered I had a heart murmur, so there was more of
a risk. If I didn’t get medication whilst in labour,
I could have got an infection in my heart. Mum drove
me in to hospital early in the morning of my day to
be induced. I was booked in and prepped and then the
waiting game. A resuscitation team had to be outside
the doors in case my baby had trouble breathing and
needed help. I was induced and finally the contractions
started. After a few hours of labour, I gave birth to
my beautiful baby girl whom I had already named when
I found out she was sick. Dijonay Faith Schloss was
the name I chose for her. I was excited and
heart broken when I had delivered her as I knew that
whilst she was in my womb, she was fine, but she wouldn’t
have lived long after I gave birth if she didn’t get
medical intervention. She was whisked away and worked
on to help her to breathe and I just laid there waiting
to hear her cry. Finally she did and so did I. I was
allowed to hold her very briefly before she was taken
away to ICU. I ended up being very sick from all the
medication and when they wheeled me into ICU to see
her again, I couldn’t stay long. I felt so sick and
just wanted to sleep it off. Not long after I was wheeled
up to my room, the cardiologist came up and gave me
the full story on what was wrong with her as they had
just done an echo on her heart. He told me she has Hypoplastic
left heart syndrome, Unbalanced Av canal, Large 1o ASD
no VSD, Large PDA PFO and her Aortic arch was narrow.
He told me she would soon be transferred to The Prince
Charles Hospital to have her first open heart operation.
Dr Justo told me she would need 3 open heart operations
altogether. He gave her an 80 % chance of living and
said that whilst her defects were extremely serious,
she was the perfect candidate for these operations.
So after he left, I sat in my room alone crying. My
baby was in ICU whilst everyone else had their babies
in their rooms. I went down to see Dijonay as often
as I could and was allowed to hold her a few times.
I was so excited when they said I could hold her. I
was in a room by myself. The nurses took a photo of
Dijonay and I kept that beside my bed and would pick
it up and look at it and break down. What made it even
harder was the fact that no one came to see me in hospital.
It was like they all thought she wasn’t going to make
it or maybe they didn’t know what to say to me. I felt
alone and scared and had no one to comfort me.
Day 2 of Dijonays
life was when she was to be transferred to The Prince
Charles hospital. I was with her in ICU when the ambulance
staff came to get her. I had one last cuddle before
she was prepared to be transferred. I broke down in
tears yet again as I watched them taking my baby away.
I knew it was getting closer to my little girls huge
operation. Mum picked me up and took me home to collect
my other children and some more clothes as we were going
to be staying in the red cross rooms at the hospital,
so that we could be near her while she recovered from
her operation. Day 7 and it was the day before her first
open heart operation. I was given the talk by the anesthetist
and totally broke down in tears, then the surgeon (Dr
Jalali) spoke to me and told me exactly what was going
to happen in theatre. He also told me that she had a
leak in her valve, but didn’t know if it was a large
or small leak. He said if it was a small leak, they
would operate, but if it was a large leak, he would
not operate and just close her up and eventually she
would die. I was devastated and broke down yet again.
I had already cried so much and it was only just beginning.
The morning of her operation, I bathed Dijonay and dressed
her ready for theatre and also put my gown on. Finally
they came to walk us to theatre and I cried all the
way to the doors. It seemed like the longest, hardest
walk I had ever done. I gave her a big cuddle and kiss,
told her I loved her and told her to be a good, strong
girl and be brave, then I handed my baby to them, not
knowing if I would get her back alive. I sat in the
parents lounge horrified, confused and scared. There
were other parents in there and they talked to me and
comforted me. The Heartkids lady, Silvia was also there
and she was wonderful. I sat and watched a dvd that
one of the other mums had brought in. It was the story
of her son and it helped me as he had similar defects
to Dijonay and he made it. It gave me some hope that
my little girl could make it too. As the hours passed
by, I knew she had a chance as they were obviously operating,
which meant the leak in her valve was only small. 8
long hours later, I got the call I had been waiting
for. I was told that my baby was out of theatre and
to go and wait in the waiting room until the surgeon
came to talk to me. About half an hour later, he came
and spoke to me and said that everything went well and
that she came off bypass straight away. I was so relieved
and couldn’t thank him enough for taking care of my
baby. I was then allowed to see her. I looked at my
beautiful baby and was horrified. She had tubes and
wires and the ventilator and drips everywhere. She looked
so small and lifeless as she had all these things attatched
and was also in a coma. I just sat there, held her hand,
looked at her and talked to her. In this operation,
they did Damus Kaye Stansel procedure (consisting of
an anastomosis of the end of the proximal pulmonary
artery to the side of the ascending aorta) and Sano
shunt (5mm homograft conduit from the RV to MPA), and
Aortic Arch augmentation and PDA ligation.
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For the first 5 weeks of
Dijonays life my children and I lived in the
Red Cross rooms and looked for a house closer
to big hospitals. I was told that if I stayed
living in Laidley, that I would not be able
to take my baby home until after the next open
heart operation as she was so unstable and needed
to have a large hospital nearby. She spent 7
weeks altogether in hospital and was finally
released home. It was wonderful having her home
for the first time ever. Dijonay was home for
only 2 weeks when she suddenly threw up and
went white. I quickly put her in the car and
rushed her to Prince Charles hospital. They
checked her over and discovered that her Aortic
arch had narrowed again and she would have to
have it ballooned asap. | She was very
unwell and had me so worried. The next morning I handed
my baby girl over again, so that they could balloon
her arch. I cried all the way again and sat in the parents
lounge again and waited. They called me and told me
I could see her. It went well and she was in for about
a week this time. Dijonay was admitted again in December
for a catheter study prior to her second open heart
operation. It was meant to be done in the morning and
she would be released later that day. Unfortunately
Dijonay does not cope with any operations very well
as her oxygen levels drop and she needs a lot of oxygen.
She was meant to go home and come back in a couple of
weeks for her next open heart operation, but ended up
staying in between ops. She had her second open heart
op and it didn’t go as well as the first. Her oxygen
dropped to mid 50’s and she had to stay on ventilation
for about 5 days and nasal prongs after that. She caught
a cold as well and had to be suctioned often and have
physio to loosen the flem.
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8 days after her open heart
she had trouble with oxygen and no one knew
what was happening. I was terrified and in tears,
asking what was going on. They decided to rush
her to ICU as they were going to put her back
on ventilation again, but she improved and was
transferred back the next day. They told me
her right upper lung collapsed and this was
the cause of her problems the day before. She
spent her first Christmas in hospital. It was
hard, but the hospital put on a huge Christmas
lunch and the kids were given presents. She
was released after being in for 1 month this
time. In February 2007 I rushed her to hospital
again. I told them I felt it was her Aortic
arch again and after doing an echo, they confirmed
my fear. They ballooned her arch again, this
time to 9mm and she was released after 1 week.
| In April 2007 Dijonay had, had a cold
for a while and I took her to doctors, but no one would
listen when I said I felt something wasn’t right. If
I said it was heart related, they would have paid attention.
A couple of days later I was changing her clothes when
I noticed a strange rash that wasn’t there earlier.
I rushed her to the doctor and she
didn’t know what it was so she sent me to hospital.
We arrived at Logan hospital and were taken straight
through and she was placed on oxygen and treated for
meningococcal. They weren’t sure what it was but started
treating her just in case. We were then transferred
to Mater hospital where she was diagnosed with RSV +ve
Bronchiolitis. She stayed overnight and was then transferred
to Prince Charles hospital. She was very sick and had
a very nasty cough. This time she was in for 2 weeks.
I have taken Dijonay to hospital several times since
then for breathing problems and catheters. She does
not cope very well with catheters as her oxygen drops.
Dijonay has one more open heart operation to go. She
is now two and a half years old and full of energy like
a normal child her age, getting in to everything and
cheeky as ever. She is smaller than other kids her age
and the only way you can tell something is wrong with
her is if you saw her scar or fingernails (they are
purple as she is living on between 60-75 % oxygen).
This has all been very difficult and heart breaking,
but I would not swap my baby and her problems for the
world. Each day with her is precious and I am so lucky
to have her. Life is certainly different now and going
through this has made me a better, stronger person.
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Dijonay has since had
her third open heart operation on April 14th
2009 and it went very well, but with some complications
post op. She had to have her chest re drained
2 more times as fluid kept building up. That
meant 2 more minor operations on top of the
open heart she had just had. She was in so much
pain and it always breaks my heart seeing my
little girl go through these operations. So
now Dijonay has had The Damus Kaye stansel,
The hemi fontan and the fontan (completion).
It has been a huge journey so far and has involved
many rushes to hospital when she has had complications
and this is all part of having a heartkid. My
little girl is a star in many ways in my eyes
and so brave. She is also lucky enough to have
been in the heartkids calender and also on Brisbane
extra. Everyday is a blessing to still have
my little girl and she will always keep me on
my toes. |
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