~Our Story~

On 31/10/2003 Peter and I received the news that we had waited to hear for so long - after trying to conceive another baby for 6 years an ultra sound scan confirmed I was finally pregnant with our second child (we already have a son Daniel who at the time was 11 years old).  Because of a previous miscarriage in November 2000 we were careful not to get too excited and decided not to tell anyone at this early stage until we were a bit further down the track and knew that this time our dream of having another much wanted child was really going to happen. We did share the good news with Daniel though who was very excited about finally becoming a big brother.

On 23/12/2003 I had a routine scan requested by my specialist Mahish Harilall just to check that baby was growing and developing normally.  Things looked really encouraging and we were so relieved and excited that our dream of having a precious wee baby was finally going to become a reality at last, what a wonderful Christmas present !!. 

 After an overseas holiday to the Whitsundays we returned home to the assumption that things were fine and we had the birth of our much awaited baby ahead of us, little did we know that our world was about to be turned upside down and that our lives were about to take on a dramatic change.

On 10/02/2004 I had my 18 week scan done at Ascot Hospital.  Peter and I decided to take Daniel along with us as he had never experienced anything like this before. We asked Daniel to sit in the waiting area at the beginning of the scan and said we would let him come in later on when we knew everything was okay - none of us were prepared for what was about to happen.  The radiologist began to examine various organs and parts of the body of the tiny baby within my womb confirming each time that things looked fine.  We could clearly see arms, legs, lungs etc along with other important things which let you know that the baby you are carrying is fine. We had also decided that we wanted to find out the sex of our baby at this scan and were informed that we were going to have a little boy.  Each time she tried to take a look at the heart she was quite hesitant and told us that baby was lying in the wrong position for a good look and that she would come back to that later. We continued to get positive information from her and then came the news that was both unexpected and devastating.  I still remember her exact words so clearly as they we so numbing to hear, she said “I don’t know how to say this, and there is no right or wrong way to do it but there is something wrong with baby’s heart, no matter how many times I try and what angles I try to use I can only see 2 chambers of the heart there instead of 4, I’m really sorry’.

Hearing those words was like a death sentence and no matter how strong I tried to be the tears just started flowing, how could this be after all this time and after finally being able to look forward to having this little baby that we had longed for for so long we were now being told that there was a serious and life threatening problem that was going to destroy our dream.  I was so thankful that Daniel wasn’t in the room at the time. How could this be true and why did we deserve this news after all we had already been through, why was it possible for others to pop out healthy babies when they felt like it and here we were desperate to give this wee baby a chance at life faced with this situation.

The radiologist left the room to organise for a second opinion.  Peter went out to get Daniel and bring him into the room as by this stage he was getting quite anxious.  He obviously wondered why I was so upset and was briefly told the news. The radiologist returned with a man who was to take another look at the heart and confirm our worst nightmare that there was a serious problem with baby’s heart and that I might need to be admitted to National Women’s Hospital right then and there.  He spoke to Mahish (my specialist) and arranged for me to have a 3D scan of the baby’s heart  a couple of days later to determine the extent of the problem and whether it was a pregnancy that was able to be continued or if it would result in the birth of a baby with no chance of survival.  To be perfectly honest after listening to the second radiologist we didn’t walk away from there with any hope at all. The next few days were so hard and the waiting and uncertainty was unreal.  Somehow we had to try and stay positive.

On 13/02/2004 Peter and I went to National Women’s Hospital for our appointment with Nigel Wilson , a cardiologist who was to do the scan for us .Nigel confirmed that our precious wee baby had a major congenital heart defect Hypoplastic Left Heart Syndrome (what ??) which meant that the left 2 chambers of the heart were very under developed.  He could also see Probable Mitral Stenosis and Aortic Atresia and an ASD (the beginning of our initiation into the world of cardiac medical terminology).  To top everything off it was also discovered that I had a low lying Placenta Praevia.

Nigel was extremely good at explaining what all this meant and even used hand drawn pictures to help us understand fully what we were dealing with. We were told that in utero a baby is not affected by this condition and will grow and develop normally, but after birth it is necessary to use a drug to allow the patent ductus arteriosus to stay open until a first operation at about 5-7 days is undertaken. Without this option survival would only be a matter of days until the ductus closed.  Listening to him talk about the various surgical procedures that would be needed briefly and the fact that these options were only relatively newly available to babies with this condition gave us both a bit of hope.  He did however ‘stress’ that we had to consider the 3 alternatives of compassionate care, a transplant, and 3 stage palliative surgeries before making a decision as to whether to continue with the pregnancy or otherwise.

Although he never really confirmed success rates of survival he did say that Greenlane Hospital and Heart Surgeons in New Zealand had an excellent reputation.  Basically if this pregnancy was 10 years ago there would have been nothing that could have been done to help our baby and he would have been sent home to die.  This statement in itself demonstrates just how rapidly medical practices and procedures are  advancing and with the prospect of better outcomes and procedures further down the track who knows what the future could hold.

I was advised to have the Amniocentesis test done to detect if there was any possibility of Down Syndrome - the results were all clear, what a relief. After researching the internet (which while providing a wealth of information does provide very mixed messages in terms of options and possible outcomes) both Peter and I felt very strongly that even though the road ahead was going to be one of the hardest things we would ever face in our lives we owed our precious wee boy a chance at the life he so deserved in the hope of a positive outcome.              

Nigel Wilson also arranged for us to meet with Heather Spinetto, a Cardiac Liaison  Nurse at Starship Children’s Hospital here in Auckland.  Heather took us for a tour around the Paediatric Intensive Care Unit to help familiarise us with the monitors, wires and tubes etc.  We also went upstairs to Ward 23B The Children’s Heart Ward. Although this was a very emotional day for us it was also extremely important for us to be able to prepare for the birth of our baby as much as we possibly could.

We decided it was important to give our special boy a name even at this early stage to enable us to bond with him and to give him an identity.  We decided that his first name would be Jakob.

Peter continued to research all he could on the internet (sadly we didn’t find the Hearts of Hope site until when Jakob was about 5 months old) and we continued having routine specialist appointments, scans and blood tests etc as with any normal pregnancy. At 30 weeks I had my second Fetal Echocardiogram done by Nigel just to check on baby’s heart again .

My specialist Mahish Harilall was absolutely great and very understanding.  He informed me that due to my Placenta Praevia I would need to be booked in for him to deliver Jakob by an elective caesarean section as to go into labour was not advisable.  Jakobs due date was 5^th July 2004 so I was booked in at National Women’s Hospital here in Auckland for Thursday 24^th June at 38 weeks.

Everything was progressing well with the pregnancy until 26^th May when I awoke in the very early hours of the morning with sudden bleeding and slight cramping. This was very frightening and after a phone call to Mahish we were on our way to National Women’s.  Observation confirmed that baby was fine and that the bleeding was caused by my placenta tearing.  The bleeding stopped and I was kept in overnight and discharged the following day, thank goodness everything was alright, although I was told to take things very easy for the next couple of weeks to ensure that Jakob would not be born too early which would obviously disadvantage him.

Finally the day had arrived and Peter and I made our way to the Hospital leaving home at about 6am in the morning as I was booked in to go to theatre about 8.30am.  It’s hard to put into words how I felt that morning, relieved and excited but also frightened of the unknown, it was a very emotional day as well as a very special day.  Because of my Placenta Praevia I was having a general anaesthetic which meant that Peter had to wait outside the theatre until Jakob was born.

Jakob Luke Fussell was born at 10.13am on Thursday 24^th June 2004 at 38 weeks and 4 days gestation.  He weighed 3930 grams ( or 8lb 11oz ) and was 54 cm long.  At birth Jakob was in good condition with Apgar readings of 8 at 1min and 9 at 5min.  His colour was good and he didn’t need a ventilator to help him breathe.  Immediately after he was accessed Jakob was taken to NICU (Newborn Intensive Care Unit) upstairs at National Women’s Hospital where he was started on his Prostaglandin medication to keep his Ductus open until he was ready for his first surgery.  Jakob also had umbilical venous and arterial lines placed in his umbilical cord stump, through these his blood pressure was monitored and he was given IV fluids.  He also had 3 leads on his chest and a probe on his foot to read heart and breathing rates and his oxygen saturations.

When I woke up in the recovery room I was presented  with a photo of our precious new son by Peter,  the waiting and anxiety was now all over and there was also relief that Jakob had arrived in such good condition and that so far things were better than we had expected, having been mentally prepared for the worst.

On my way from Recovery up to the Ward I was taken to NICU to see Jakob for the first time, words cannot express my feelings and emotions at that special moment, I was unable to hold him but just looking at this wonderful miracle who looked so perfect was a blessing and a feeling I will never forget.

Later on that night I was taken down by wheelchair to spend some time with Jakob, Peter and Daniel, it wasn’t easy seeing him attached to monitors but at least we were prepared for this beforehand and were aware that this would be the case for wee Jakob for the first month of his life at least. The next day I was able to hold Jakob for the first time which was very special.

On Sunday 27^th June 2004 it was Jakobs big moving day and time for him to be transferred to PICU ( Paediatric Intensive Care Unit ) at Starship Children’s Hospital which is only about a 20 minute drive away from National Women’s.  I was discharged that day as well although it was still early days for me after my caesarean I was very thankful that my recovery had been good.  Mahesh  (my Specialist) was very understanding  also and was more than happy for me to leave with Jakob in order to be able to spend as much time as we possibly could with him before his first operation.

While Jakobs incubator was being organised for him and his monitors were being changed to portable ones I was able to have a big long cuddle time with him.  The nurses at NICU were all so wonderful and genuinely caring, they had started a picture journal for Jakob and had also made him a very cute “Cat in The Hat” name badge for his cot. Although it is a critical care area they made things so much better for the parents just through the little touches like putting lovely brightly coloured sheets on the cots.  Thank you to all the people who looked after Jakob in those first 4 days of his life.

The ambulance arrived at 1pm and accompanied by 3 nurses Jakob and myself were driven to Starship, Dad and big brother Daniel made the trip by car and met us at the ambulance bay.  It was strange taking Jakob out of the hospital, he enjoyed his very first ride and slept through the whole thing.

When we arrived at PICU Jakob was settled into his new bed along with his special teddy “Floppy Joe”.  He was still very stable and was coping very well without a ventilator, we were very proud of him. It was so hard leaving him there each night and going home and it was then that we started the daily ritual of phoning every night before we went to sleep and again first thing in the morning to see how our little man was.  We were so lucky that we lived only a matter of 30 minutes drive away from the hospital so we could try and keep our lives as normal as possible while we weren’t at Starship with Jakob, which was really important.  While he was in intensive care being constantly monitored by the nurses there was little we could do other than to just be there for him and it was better for us to be able to go home to our own surroundings and to reflect on the daily progress rather than to have to deal with all this in a strange and unfamiliar environment.  Thank god we lived in Auckland!!!

On Monday 28^th June Jakob was still doing okay and he enjoyed lots of lovely cuddles with Mum and Dad.  He looked so great and it was so hard to believe that this beautiful little boy had a major and life threatening problem, maybe we just didn’t want to accept this now that we had got to know him so well.

The following morning when I arrived to see him he wasn’t coping quite as well as he had been, his breathing was quite laboured and his little chest was working harder than it had been.  Although this was to be expected it was still really hard to cope with at the time, Jakob was nearing the time when he had to have his first surgery to hopefully keep him alive.  The doctors decided to put Jakob onto a ventilator to help him with his breathing and to semi sedate him to enable his tiny heart to rest in preparation for his first surgery.  Seeing him on the ventilator was both frightening and upsetting even though we knew things would eventually turn out this way.

Jakobs first surgery was scheduled for the next day, Wednesday 30^th June 2004.  His surgeon Kirsten Finucane met with us on the Tuesday night and thoroughly explained the procedure to us, promising to do her very best for Jakob and giving us every confidence that he would be in the very best hands.

At around 11 am on Wednesday 30^th June Jakob was taken into the operating theatre for his very first operation (Stage 1  Norwood ), it was really hard to say goodbye to him not knowing if we would ever see him alive again and although we were as prepared as we could be for this day it was still to be one of the longest and most anxious days that we had ever experienced.  Peter, Daniel and I went back home to try and keep ourselves as busy as possible to pass the time. We then decided to stay in the city close to the hospital that night to be there if needed rather than having to travel to be with Jakob.  7 ½  hours had passed and it was about  6.30pm before we received that crucial call that Jakob was off the heart bypass machine and was reasonably stable.  We all just sat around in tears so grateful that so far everything seemed to be alright, although we still had to be realistic and understand that things could change so quickly.  We tried to stay positive and continued to wait and pray until we received a call from PICU to say that Jakob was now in Intensive Care and that we would be able to go and see him.  At around 8pm we arrived at PICU where we could at last be reunited with our precious wee man 9 long hours after we had left him.  What a day this had been, I think I had been through just about every emotion possible but looking at Jakob seemed to make it all worth while.

It was one of the hardest things seeing his tiny body limp and motionless, with drains, wires and tubes attached everywhere and the patch on his chest that displayed the message “My Chest Is Open”, words could not even begin to explain the overwhelming sense of relief, fear and uncertainty.  Kirsten (his surgeon), came to see us and told us that Jakobs operation went very well and that the only real concern she had was with an irregular heart rhythm that he had when she was trying to take him off the bypass machine but thankfully this was something that corrected itself.  Overall she was very pleased and we were so grateful to her for giving Jakob this precious chance at life that without the operation he would not have had.

Jakob continued to remain stable and he was gradually weaned off some of the 8 different drugs that he had been on since his surgery.  We spent as much time as we could with him during those first few critical days stroking his tiny hand and talking to him, it was an extremely emotional time and we had to keep strong and positive for our own sakes as well as for wee Jakob.  He had fought a huge battle and had overcome his first hurdle and he was already showing us what a strong and determined little boy he was, we had to take strength from his courage and just be there for him, giving him all the love and support we could.

Seeing him open his eyes and look at us and moving his body as the sedation slowly wore off was such a wonderful blessing.  On Saturday 3^rd July Jakobs chest was closed up in the Intensive Care, just 3 days after his operation.  He began to show that he was ready to come off the ventilator also and on Sunday 4^th July he was extubated from the machine replacing this with oxygen prongs .This was also a very special day as we were able to hold and cuddle Jakob for the first time since his operation.

Jakob continued to do so well and the following day I was able to dress him in his own clothes and tube feed him through his NG tube, a moment I will never forget. He was transferred upstairs to Ward 23B, The Children’s Heart Ward, and into the High Dependency Unit or HDU room for the night.  The following day (Tuesday 6^th July) Jakob was moved into a room of his own and was only now attached to a monitor recording his heart rate and resps and his oxygen saturations.  He also had his NG tube in one side of his nose for feeding although he was slowly starting to suck from the bottle.  It was still very difficult to leave him and go home at the end of each day but we knew that he was in good hands.

On Friday 9^th July Jakob had his pacer wires removed which was another milestone on his road to recovery.  Although we were told of the possible risks of a blood clot developing after this minor surgery we certainly weren’t prepared for what lay ahead. Jakob was monitored for the next few hours after the removal which was quite routine and he seemed to be doing okay.  Suddenly everything changed so quickly and he went from a happy and contented little boy to a very distressed wee thing who was clearly in a lot of pain and very uncomfortable.  He went very very pale, almost grey, and his temperature dropped very rapidly with his heart rate doing the opposite and increasing very high.  He was so upset and was crying in a way that I hadn’t heard before which was very frightening.  We were all so worried and even the nurses and consultants were concerned and began to work very quickly to determine the problem.  Jakob had an Echo Scan done of his heart and it was discovered that the removal of the wires earlier in the day had created a tear on the outside of the heart which had caused bleeding and a clot to form.  This clot was pushing onto the BT shunt causing pressure which if left could become fatal, the medical term used for this condition is significant thrombus in the right atrium.  Jakob was rushed to theatre for an emergency operation to remove this clot  This surgery (performed by Shingo – ‘very easy – no problem”) only took 1 ½  hours and only the bottom half of the scar had to be reopened and this was stitched up straight away this time.  Jakob came through this terrifying ordeal okay and spent the night in PICU for closer monitoring but thankfully he was stable and although at 17 Days old he had already been to theatre twice he was amazing and proved to be a real fighter. Even though it was a horrible experience for us to have to go through it taught us how rapidly Jakobs health can change and what to expect when this happens.

The next day, Saturday 10^th July 2004 was big brother Daniels 12^th Birthday .  We all went to visit Jakob in PICU and Daniel got a huge surprise to see that Jakobs nurse had made a wonderful card for him from Jakob and it was hanging above his cot waiting for him.  This nurse in particular “Jenny” was absolutely great to us and so caring and thoughtful, she made Jakobs stay in PICU so much easier for us to handle and for that we will be forever grateful.  Jakob was transferred back upstairs to Ward 23B and into his own room again that afternoon.  Following this Jakob remained stable and although he was slow to establish his bottle feeding he continued to have top up feeds through his NG tube. 

On Sunday 18^th July we were finally able to take our precious wee boy home for the first time, what a wonderful day that was, he truly was a little miracle. He was visited twice a week by his “Home Care Nurses” from Kidz First Hospital to monitor his weight and oxygen saturations.  It was so good to have Jakob at home with us but unfortunately this was only to be a brief pleasure.  He was in and out of hospital due to low oxygen saturations and lack of weight gain and was re admitted again on Monday 16^th August - this was to be a long stay for Jakob.  He was put on oxygen to help with his low saturations and was also put onto an oral antibiotic in case there was any infection. 

On 2^nd September Jakob went back to the theatre for a Cardiac Catheterisation to determine the state of his heart and to help find the reason for his continued low sats.  The surgeons found a significant narrowing of the BT Shunt and the right pulmonary artery and Kirsten decided that Jakob would need to have an emergency Bidirectional Glenn operation done along with a plasty of the right pulmonary artery.  Originally this would not have been done until Jakob was about 4 months old but it was to now be scheduled for the following day.

On Friday 3^rd September at aged 10 weeks and 1 day old Jakob had his second major heart operation.  This was another long and stressful day for us all waiting for the important phone call .  We waited what seemed like an eternity and then the pressure got too much and Peter phoned PICU to see if Jakob was off Bypass.  That was the worst thing we could have done as we were informed that Kirsten had undertaken a couple of attempts to wean him off but without success and he was put back on it again. We were so worried and very scared that maybe this time we would not be so lucky and that having so much surgery done in such a short period of time was putting our precious wee boy through too much.  It was an extremely worrying and anxious time and although we were trying to stay positive this time it seemed so much harder.

Jakob once again showed his determination and became stable enough to be taken to PICU .  We were able to see him and this time although we knew what to expect I found it very difficult.  Even after talking with Kirsten I could tell that she wasn’t overly happy with Jakobs condition and she said to us that she had done her best but was still quite concerned for him and that the only other option available in need was to insert another shunt, which was something she had never had to do before but the last resort if it came to that.  At least Kirsten was very honest and up front with us and that is something that is to be admired.  Only time would tell and it was up to our little miracle now to battle on and prove us all wrong.

On 8^th September he had his pacing wires removed, this time thankfully without any clotting. Jakob was slow to improve his saturations and remained on oxygen until 13^th September.  His colour was now however a lot better and he looked quite pink and had more energy. He kept trying with his bottle feeding and still required NG top ups but he was gaining weight and that was the most important thing.  He had an Echo Scan of his heart done which showed that he had moderate right ventricular dysfunction and was put onto Captopril 3 times a day to assist this.  He also had his NG tube removed as well and was being fully bottle fed now which was great.

Thursday 16^th September 2004 was a very special day for us in more ways than one, not only was it Peters 40^th Birthday but it was also the day we were able to take Jakob home again after his month long stay in hospital, what a wonderful Birthday present!!!.

Jakob continued to progress and feed well and it was such a pleasure to be able to bath him properly and give him the attention that he had missed out on during his hospital stay. What a wonderful sound it was to hear him wake in the middle of the night for a feed -  I finally felt like I actually had a baby.

A week after Jakob had come home his wound had started to get quite red with small pustules at the top and bottom of his scar.  After a trip to our GP Jakob was put onto an oral coarse of antibiotics and was also taken every second day to have the wound redressed as it had started to get quite oozy.  Unfortunately the antibiotic didn’t seem to improve things. 

On Monday 27^th September 2004 Jakob was referred to Starship Hospital Ward 23B again by his Home Care Nurse Chris as his wound was now quite infected.  Kirsten (Jakobs Surgeon)  examined him and decided he needed to be admitted and that she would perform an exploration of the wound which yes unfortunately did involve another small operation and opening of his scar once again to remove the infection and make sure it had not gone too deep which could prove fatal.  We arrived at around 3pm and by 5pm Jakob was on his way to theatre.  The operation was quite straight forward and he was back up on the ward again a couple of hours later.  Jakob received antibiotics through an IV PICC line for 7 days after this and so was required to stay in Hospital for this period.  He was discharged on 6^th October with another 5 days of oral antibiotics and had to go back on Saturday 9^th to have his sutures removed. 

On Thursday 4^th November Jakob had his first review at the Paediatric Outpatients Clinic with his Consultant Dr Tim Hornung and Dr Jutta Van Den Boom a Paediatric Cardiology Registrar in at Starship Children’s Hospital .  Now aged 4 ½ months Jakob was given an excellent report.  He has been feeding approx 600ml via his bottle daily of 16% Karicare Formula and his weight has been gaining steadily, now weighing 6.58kg just below the 50^th centile.  His oxygen saturations were at 84% which was good for Jakob.  He had an ECG and a Chest X-Ray done and these all looked fine, along with his Blood Test.  Developmentally Jakob is rolling over and sitting while supported as well as pushing his bottom up while lying flat.  He is starting to mouth objects and is beginning to dribble a bit too showing that teeth are on their way!

There are no concerns with his hearing or sight and he is babbling away and responding appropriately.

On Sunday 7^th November 2004 Jakob enjoyed his first taste of solids - “Apple”.  He is now having a couple of teaspoons of solid food daily - “well done”!

It’s now Thursday 9^th December and Jakob is well on the way to his first teeth.  Because he is on Aspirin daily to keep his blood thin he unfortunately is not able to have “Bonjela “ teething gel to help sooth his gums and is only able to get relief for his pain from paracetamol and a cool teething ring from the fridge - poor wee man.

He now weighs 7.46kg and is over the 50^th centile.

To sum things up Jakob is doing so well, he is a very strong and determined wee boy who so far has beaten the odds and has overcome some extremely large obstacles.  He has taught us all some wonderful values and lessons already during his short time with us and we will continue to be by his side always to support him and give him the courage that he will need.  We are so very proud of our precious little piglet and love him so much, he is a huge part of our lives and we all need to try and stay positive and take each day at a time enjoying this little miracle. When his face lights up with a huge smile and he chuckles away it makes it all worthwhile