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.

I had been down in Lower Hutt visiting with my family for a funeral when my blood pressure had become high and I had protein in my urine. The obstetrician decided that it would be best to get on and get our baby delivered by induction. After two failed inductions and three excited days of waiting for labour to start, 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 3.665 Kgs and he was beautiful healthy, baby. His apgar scores were at five minutes an eight and then at ten minutes he scored a ten. He was perfect.

For the first day and a half 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. We were told not to worry and that often babies are like this after they have been born. We didn’t worry because we trusted the nurses. I was on heavy painkillers for my c-section and on the afternoon of the 25th I had managed to start walking to the toilet and I had had a shower. Every three hours our nurse came to help me with the breast-feeding which Fynn was still having trouble with. This day with Fynn was perfect. We couldn’t stop looking at him, holding him and touching him.

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). Our little baby had been taken away and stripped of the clothes that I had carefully washed and then clothed him in when he was born. I was very upset but I was told not to worry as these things happen and it may just be an infection. 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 exploded and our world as we knew it was torn apart. I was screaming and crying and there were many people around my bed trying to calm me. 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 breath for himself at this point. We were told that the problem was treatable but it was very likely that Fynn could die. I was devastated. I didn’t want to see Fynn. I just wanted to remember him, as he was when he was born and the day after he was born when everything was perfect. I kept sending Simon down to see Fynn and then he would come back urging me to come and see for myself. After lunch I went down and the staff were wonderful. They had made Fynn a special sign with his name on above his cot. They told me everything and let me hold my baby. Later on that day Fynn had an M.R.I to confirm the diagnoses and to see the complexity of the problem. He was intubated and put to sleep. This was terrifying for us. 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, the Air Ambulance flew us with Fynn 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. 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 nine 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.

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.

Bridgette Wright and Simon Coyle, Fynn Wright-Coyle’s proud mummy and daddy: vgm.info@nzord.org.nz.

17 January 2008 Update

Fynn had his fifth embolisation in June last year, which went really well. The surgeons tell us that 99% of his malformation has now been closed off. He came through the procedure with no complications and with no pain this time. He was in hospital for three nights and was then discharged. The surgeons think that he may need another 2 embolisation, one when he is two and then maybe one when he is 4 or 5. It is fantastic that they are keeping such a good eye on him.

Fynn is now 21 months old. He is walking all around the place and can say a couple of words. He is still seeing a developmental therapist and a speech therapist as he is not quite up there developmentally with his peers but the gap is slowly closing. We no longer have the home care nurses visiting as his breathing and weight gains are all normal.

In November of last year he had an MRI to check how things were going with his malformation and the results showed that it wasn’t worsening.

Fynn is growing up to be a happy and contented little boy. He is very social and loves to interact with other people and be the center of attention. He enjoys all the things that other toddlers his age are enjoying including sand, water and messy play and running and climbing activities. As a family we are enjoying not visiting the hospital nearly as often and we are enjoying being a normal family. Here is a photo of Fynn during our Christmas holiday after a swim in Lake Taupo.

Again 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.

Bridgette Wright and Simon Coyle, Fynn Wright-Coyle’s proud mummy and daddy: vgm.info@nzord.org.nz.

April 2009 Update

 

Fynn will be three years old in just under a month’s time! Our quiet little baby has grown into a very busy, little boy! We both can’t believe how much Fynn has grown and developed during the last year.

In October (2008), Fynn who was 30 months old at that time had his sixth embolisation at Starship Hospital in Auckland. He continues to be treated by the expert Interventional Neuro Radiologists, Dr. Ayton Hope and Dr. Maurice Moriarty.

The embolisation procedure was scheduled for May but had to be rescheduled a number of times before it could be carried out. This was due to PICU (Paediatric Intensive Care Unit) being full and unable to accommodate and provide the necessary care for Fynn after his embolisation. We were so relieved to say the least when he finally was able to have his procedure completed in October.

Fynn came through the procedure well and with no complications. After a night in PICU and a bubble bath in the PICU paddling pool he was back to his normal busy self and was discharged home. Drs. Hope and Moriarty are both pleased with the total amount of the malformation that they have now successfully closed off.

Fynn is due for a routine monitoring MRI in the next few months and all going well he won’t require any more embolisations until he is four or five years old!

  

Fynn is now meeting all of his physical milestones and was discontinued from his developmental therapist just after he turned two. He is very physically inclined and loves climbing, swinging, bouncing and most of all running. He is always on the go. This makes us so proud to be his parents.

Fynn continues to be a happy, active and social little boy. He attends an early childhood centre for three sessions a week along with music and swimming classes, all of which he really enjoys. He loves meeting people and playing with other children. He enjoys outdoor physical play but he is also happy in his own company playing with his toys or sitting and reading his books. He loves helicopters, planes, trains, trucks and his doll!

He really is a little treasure.

We continue to have the wonderful support of our speech therapist, Sarah Eyre who works with us and the early childhood centre where Fynn attends.

Over the last two months we have seen a huge increase in Fynn’s spoken vocabulary. He has a large bank of words that he uses and he is beginning to put two words together, say little phrases and can put the final word on the end of sentences for us. Fynn also uses sign language to communicate with us and we have found this such a useful tool especially when his speech was so limited. He is now using his signs less and less as he is using his words more and beginning to realise the impact and response his speech can have with other people.

We have also noticed an increase in his understanding and processing when being spoken to. He is starting to respond without prompts and starting to initiate conversation with us. For us this is so positive. We love hearing Fynn’s little voice and what he has to say. It is exciting to have another way to see what he is thinking and to see more of his personality coming through. He has a keen sense of humour which is now coming through with his speech.

We have been using “The Listening Program” with Fynn and believe this has really helped in the above areas. “The Listening Program” is a classical music based auditory stimulation program which involves Fynn listening to classical music pieces which have been “prescribed” for him for 15 minutes a day, five times a week. The music helps create and strengthen pathways in the brain and is fabulous for all sorts of conditions, age groups and well being. The website for more information on this is www.thelisteningprogram.com.

We have found managing Fynn’s behaviour to be quite difficult at times. We have found that as his speech and processing increases his behaviour improves. We have used many strategies for managing his behaviour and have found the support, ideas and practical help from our social worker, Jules Adams and Sarah Eyre (speech therapist) to be invaluable.

For us as a family we are enjoying being “normal”. We are enjoying spending time together without an embolisation date over our heads and we are enjoying seeing our son grow, develop and do “normal” things.

We are so lucky to have such a wonderful little boy and to be together as a family.

Again we wish to thank Drs. Ayton Hope and Maurice Moriarty their medical and surgical care, support and time. We believe they are truly very special men who can and do perform miracles.

We also wish to thank all the professional people who work with Fynn and us as a family. It is these professional’s experience, expertise care and commitment that has made a difference in our little boy’s life and in our life as a family. These professionals have helped us get to the “normal” point on our journey, where we have wanted to be for so long.

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.

Bridgette Wright and Simon Coyle
vgm.info@nzord.org.nz