|
Fynn Wright-Coyle |
|
|
|
|
|
|
|
|||||||||||
|
||||||||||||
|
|
||||||||||||
|
|
||||||||||||
|
|
||||||||||||
|
Fynn’s Story |
||||||||||||
|
|
||||||||||||
|
This is the story of Fynn’s life with a Vein of Galen
Malformation – so far… Our names are Bridgette Wright and Simon Coyle and we live
in Auckland New Zealand. On the 24th of April 2006 we became the very proud parents
of our wonderful little boy, Fynn. This is the story of Fynn’s life with a Vein of Galen
Malformation – so far. Fynn was delivered by cesarean section at Lower Hutt
Hospital. I had been down in Lower
Hutt visiting with my family for a funeral when my blood pressure had become
high. I had protein in my urine and it
was decided that it was best for me to be induced at Lower Hutt Hospital. After 2 failed inductions Fynn was delivered by cesarean section
at 2:31pm on the 24th of April 2006.
This was the happiest moment of both of our lives. Fynn was born 3.665 Kgs but most importantly he was a
beautiful, healthy, baby boy. For the first two days of Fynn’s life he was very sleepy
and didn’t really want to breastfeed.
The nurses and midwives were not concerned because he was content, had
a good blood sugar level and a good colour. On the night of the 25th of April 2006 our whole happy
world was to come crashing down. Our nurse was helping me to get Fynn to feed when another
mid-wife popped in and we were so glad that she did. She thought that Fynn looked like he was
breathing a little fast. She timed his
rests and yes, he was breathing fast.
They called the registrar to come and see Fynn. This was the same registrar who had
examined Fynn at his birth and earlier that morning when all was well. She too thought that Fynn’s breathing had
increased and transferred him to the S.C.B.U (Special Care Baby Unit). Some x-rays of Fynn’s chest were taken and
the head pediatrician was called in. After examining Fynn and his x-rays the pediatricians came
to talk to us. We were congratulated
on becoming parents and then told that Fynn’s heart was taking up 70% of his
chest and he was going into heart failure.
Fynn would have to be transferred to the N.I.C.U (Neonatal Intensive
Care Unit) at Wellington Hospital right away. It was at this moment that our happy bubble burst and our
world as we knew it was torn apart. We were transferred by ambulance to Wellington Hospital and
arrived just before midnight. We were
told to wait up in the Maternity Ward while they admitted Fynn and had a look
at his heart with an echocardiogram. It
was such a scary time and I couldn’t stop crying. Around 1am we were told that we could see Fynn. The admitting doctor had seen the
echocardiogram and told us that Fynn’s Patent Ductus Arteriosus (PDA) in his
heart hadn’t closed off completely but the real cause of the heart failure
was a Vein of Galen Malformation (VGM).
The admitting doctor putting a stethoscope on Fynn’s head had
diagnosed this as he could hear the blood rushing into the malformation. He was put on diuretics to help the heart failure, hooked
up to monitoring machines but still able to breathe for himself at this
point. The next day Fynn had a M.R.I to confirm the diagnoses and
to see the complexity of the problem.
We were told that Wellington Hospital didn’t have the doctors or the
equipment to help Fynn and that we would be transferred by Life Flight Air
Ambulance to Auckland Hospital where he would be admitted to the National
Woman’s N.I.C.U. On the 28th of April we were flown with Fynn by Air
Ambulance to Auckland. Fynn was
settled into the N.I.C.U, which would be his new home for the next month and
a bit. On the 1st of May we meet with Dr. Ayton Hope, one of the
Interventional Radiologists that looks after Fynn. He explained to us what a Vein of Galen
Malformation is and how it can be treated.
He also explained that this illness is very rare and that they hadn’t
treated anyone in the last 10 years.
He explained that Fynn was very sick and that he had a 70% chance of survival with an embolisation
however if we choose not to operate then he would more than certainty die. We gave consent for the embolisation to take place the next
morning. Ayton then explained all the terrible things that could go wrong
during the surgery and that it would be very difficult given Fynn’s size, age
and that he was in heart failure. The morning of the 2nd of May arrives after not much
sleep. This would become one of the
longest days of our lives. Fynn’s
heart failure is now very bad. He is
fully ventilated and his liver and spleen are not looking too good. This will make the surgery even harder than
it already was going to be. We meet Dr. Hope who introduces us to Dr. Maurice Morriarty
who is the other Interventional Radiologist.
Dr. Hope and Dr. Morriarty work together as a team and will be Fynn’s
surgeons. These are two wonderful men whom we fully trust, respect and owe
much too. Fynn’s embolisation takes 8 hours. The doctors use coils and glue to close
some of the feeder veins.
Unfortunately Fynn’s malformation is very complex and the doctors tell
us that they will need to embolise more of the veins on the 4th of May to
make any difference to Fynn’s heart failure. Fynn is still fully ventilated and rests for a day before
his next 8 hour embolisation. I don’t know how Simon and I get through these first long
weeks of waiting and not knowing but we do. It is funny how the most happy
time of your live can become the most scary and frightening. We spend all day sitting with Fynn in his room. We read and sing to him. We hold his tiny little hand. We tell him that we love him and that we
can’t wait to take him home to show him his new bedroom and all the lovely
things that we have for him. My mother
stays with us and is an amazing support. I express milk every 3 hours and feel like I have an
intimate relationship with the breast pump.
It is all I can do to help my little baby. Fynn is only allowed 5mls of milk every
three hours. He is fed through a nasal
gastric tube. Simon reads and re-reads
the doctors notes and asks the doctors and nurses questions. He feels this is all he can do to help
Fynn. On the 4th of May Fynn has his second 8 hour
embolisation. The doctors are pleased
with what they have achieved. Now we
have to wait to see how Fynn’s body responds to the closing off of some of
the veins and to see if this makes a difference to his heart failure. After a night of very high temperatures and a lumber
puncture, it is discovered that Fynn has developed an infection in his blood
possibly from one of the many lines that are in him. He has to have I.V antibiotics for 21 days
and his condition worsens. A little
set back but we are sure our little star can fight this too. Slowly, day-by-day, Fynn gets a little better. He gets taken of the ventilator and gets
put onto C.P.A.P. On the 11th of May he is taken off C.P.A.P to see how he
goes breathing for himself for a few hours.
He doesn’t go back on! He is a real fighter our little boy. We are so proud! This is a positive indication that his heart failure is
improving. Every day that we come in to visit our little star he gets
a little better and this makes us feel a lot happier. On the 13th of May he is deemed well enough to graduate to
a level two room and I can start breast-feeding him once a day. A real progress. On the 18th of May Fynn is put into an unheated cot and is
allowed his first real bath! This is
so exciting for me and I ring Simon at work to tell him the wonderful
news. Fynn can now wear clothes and I
am allowed to take him out of his room and around the ward in a pram. How I have yearned to do all these things
with my little baby and now that I can I am so excited. The doctors and nurses at Auckland N.I.C.U are
amazing. They start to become our
“hospital family”. They are family
oriented and committed to caring for our baby and our family. We are grateful to all the nurses for
teaching and showing us how to care for our baby. As the weeks go by we become more confident in caring for
Fynn. We begin to feel like his Mummy
and Daddy again and think that we will be able to care for him without the
doctors and nurses when we get to take him home. We have a practice caring for Fynn in the
self-contained family rooms on the N.I.C.U ward for a couple of nights
without any monitoring equipment on Fynn.
It is reassuring to know that medical help is available just out the
door. We don’t need any help and begin
to feel confident caring for Fynn on our own. On the 1st of June our family graduates from N.I.C.U and we
get to take Fynn home! We are so
happy! We have been waiting for this
day for a long time. After many thank-yous, hugs and tears we set off for home. Our story doesn’t unfortunately end here as we had
hoped. This is just the beginning of
Fynn’s treatment and monitoring of his Vein of Galen Malformation. Once home Fynn has weekly monitoring from our wonderful
Home Care for Kids Nurses. They check
his oxygen saturation level, breathing and signs of heart failure, weight and
head circumference. The Home Care nurse helps me with breast-feeding and refers
Fynn to our wonderful Dietician Michelle, as Fynn isn’t putting on enough
weight. We start giving Fynn Duocal
supplements to help his weight gains. We have many check ups at Starship Children’s Hospital in
Auckland. Fynn has regular cardiology checks with his Cardiologist
Tim Hornung. He is concerned about the
pressure on Fynn’s lungs and his PDA has only slightly minimized. Fynn is still on diuretics to keep him out
of heart failure. He has his eyes and ears tested and they are all working
well. He also visits a general pediatrician and neurology
pediatrician to check his mental and physical development. Fynn has regular MRI and MRA scans to see what is happening
to the malformation and the blood flow in his head. After his 8 month MRI and MRA our
Interventional Radiologists call us in to discuss their findings. They believe that the vein that is draining
the blood out of Fynn’s head is thickening in response to the large amount of
blood that is being shunted through the malformation. This is a problem because as the vein gets thicker it
reduces the amount of blood that can be drained away from the head, which
could cause this vein to rupture under the increasing pressure. Dr. Hope and Dr. Morriarty advise us to
“knock on” with more embolisations. On the 18th of December 2006 and then on the 20th of
January 2007 Fynn has his third and fourth embolisations. Even though we have been through these procedures twice
before nothing can prepare you or ease your worry as a parent. Fynn sails through the third embolisation and comes out of
the anesthetic as though nothing has happened. The fourth procedure sets Fynn back a
little as he is in considerable pain for a week and still having pain relief
the following week. Our Interventional
Radiologists tell us that the reason for this is the amount that they were
able to close off and the location of these veins – close to the brain and
the back of the head. After these last two embolisations it has been amazing to
see the physical and developmental changes in Fynn. A month after the fourth embolisation he has his cardio
check and the tests all show that his heart and lungs are back to normal and
the PDA has minimized so much it cannot be heard. Fynn is taken off his diuretics and doesn’t
look back! At 9 months he finally rolls and starts to enjoy lying on
his tummy. He can sit unsupported and
play for long periods of time. He is
beginning to stand on his legs with support and starting to vocalise
sounds. Our Neuro-developmental
Therapist is amazed at the milestones that Fynn is now meeting. Fynn’s weight gains have increased and he is looking
healthy and even has baby fat now! We are the proudest parents you have ever seen! It is now May 2007 as I write this and Fynn has just turned
one. Turning one is an incredible
milestone for us to reach as a family.
There are times that I really thought that we wouldn’t make it to one
week or even one month, but like Maurice and Ayton told us the first time
that we met them, and every time we’ve see them since, “take each day as it
comes.” It has taken us a long time to
be able to do just that. Despite all the stress in the N.I.C.U, the worrying about
weight and growth and development, getting Fynn to all his appointments and
keeping him away from other people and possible infections, we have been one
of the lucky ones. We came home from
N.I.C.U with our son and we have had one year as a family. Not every family we met in hospital has
been as lucky as us. We have learned to celebrate every success however small it
is and to treasure every day that we have together. Some days it is really hard but we do get
there with support from each other, our families, friends and the many
wonderful professionals that are on Fynn’s team and by remembering how lucky
we really are. Fynn’s next procedure is coming up in the next month. This procedure hopefully will be his last
for a few years. Our surgeons are
hoping to close off the remaining larger veins, which will mean that 99% of
the malformation will be shut down. If
all goes well then Fynn will have the last 1% embolised when he is four of
five years old. The veins that are too
tiny to safely close at present will have grown bigger and therefore will be
easier to shut down. We cannot thank Dr. Anton Hope and Dr. Maurice Morriarty
enough for the wonderful work that they have done on Fynn so far. The care, support and time that they have
given our family has been phenomenal.
They are truly very special men who have a very special place in our
hearts. We wish to thank all the professional people who work with
Fynn and us no matter how little their acquaintance or help has been. It has
made the life of our little boy possible. We have been truly blessed many times over with the help,
experience and expertise of these people. A huge thank you to all our family and friends. We couldn’t have got this far without your
support and love. UPDATE: We have set up our own small support group in New Zealand and have a website too. Our address is www.veinofgalen.org.nz if you are interested
We hope that our story can help or be of encouragement to
other families going through a similar process to us. If you would like to contact us for
support, a chat or anything then we would love to hear from you. bridgetteleighwright@gmail.com |
||||||||||||
|
|
||||||||||||
|
|
|
|||||||||||
|
|
|
|||||||||||
|
|
|
|||||||||||
|
|
||||||||||||
|
|
|
|
|
|
|
|
|
|
© 2001 - 2006 www.veinofgalen.co.uk Designed and
Maintained by Vein of Galen
|