Jacob's Story
How fortunate Jacob's been! The team at the Prince Charles Hospital, dedicated specifically to cardiothoracic care, have saved our son's life on numerous occasions, upholding their motto "To serve with honour - To proceed with excellence".
We would like to especially acknowledge Dr Peter Pohlner and Dr Chris Whight, as they have had the main responsibility for Jacob's treatment over the years. We have always felt reassured in their presence and their knowledge, skills, energy and humour, even under extreme pressure, never ceased to amaze us.
The Prince Charles Hospital first became part of our lives on the 6 October, 1992, the day after Jacob's birth. After our ambulance ride to the Paediatric unit we were met by Dr Whight. He promptly performed an echocardiogram which revealed a number of abnormalities. We heard the term complex Congenital Heart Disease for the first time. We were to learn the full extent of Jacob's heart 'problems' over time: double outlet right ventricle/transposition of the great arteries, pulmonary atresia, a patent ductus arteriosus, coarctation of the aorta, a straddling mitral valve and multiple large ventricular septal defects.
After struggling through his first night, Jacob was prepped for a Septostomy operation on 7 October. However, serious complications developed during this surgery and we were escorted into the ICU, where Jacob was ventilated but holding on. We struggled to find a place where we could caress him as his tiny body was covered with so much life saving equipment.
On 9 October, Dr Whight decided they needed to try again as Jacob wasn't managing. Jacob was again prepped for surgery and went to theatre at 4 pm. After many prayers, we were relieved after 7 pm to hear he was fine. They didn't put another hole in as planned, as it was discovered that the pulmonary valve was closed. Instead they spent time taking pictures through the catheter to plan what could be done in surgery the next day.
So on 10 October, Dr McGiffin and Dr Whight explained that Jacob required a left Gortex shunt joining the left subclavian and the left pulmonary arteries. He left for theatre at 12.40 pm and we were relieved to see our darling baby at 5 pm. While the surgery was successful, his post-operative recovery was slowed with complications. Jacob developed a frank pulmonary oedema, pneumothorax and was in congestive heart failure. On the 11 October, a re-echo showed a small flow into the left pulmonary via the shunt, so he was returned to theatre the next day.
Jacob, now 1 week old, underwent another operation whereby the shunt was reviewed and explored and his ductus clamped. His post-operative was slow once again and he was dependent on the ventilator. All the staff of the Prince Charles Hospital showed great concern and took excellent care of Jacob and supported the whole family during this difficult time.
With an oxygen saturation level of 74%, Jacob was discharged home on 21 October, 1992. What an emotional homecoming! It was scary and wonderful all mixed together. Sarah (3 years at the time) wanted to hold her baby brother and not let go!
With lots and lots of visits to Doctors, loads of support from family, friends and Heart to Heart Cardiac Support Group, Jacob's first year of life saw us adapt, adjust, and learn more about congenital heart disease.
On the 16 August 1993 an echo revealed that Jacob's dad, Neville, had congenital heart disease. In shock, we explained to family and friends that Nev needed an aortic valve replacement, as he had Aortic Stenosis.
Leading up to Nev's surgery, Jacob was experiencing more difficulties. He seemed to catch every illness going around and was still failing to thrive. At 18 months he was once again admitted to hospital with oxygen sats of 50 % - 55%. Around this time he was also diagnosed with asthma and we thank Jacob's paediatrician, Dr Ron James, for helping us through some tough times.
Nev and Jacob were both scheduled to have heart surgery around the same time. Nev went first and Dr Cochrane operated on 23 November, 1994. We were relieved that Nev's open heart surgery went well despite the need for a transfusion. It was heart breaking to see him so sick but it was great to know the valve replacement was successful.
Nev was able to spend Christmas/ New Year recovering and then in February Jacob (2 years old at the time) was admitted to the Paediatric unit for his next lot of surgery. Dr Pohlner operated leaving Jake's subclavian shunt in place and put in a central aorto-pulomonary shunt. Jacob made good progress with only a few 'setbacks'. With two shunts in place his sats were now 85%. Jacob and Nev had matching 'zippers' and Nev had an enormous depth of understanding of what Jacob was going through.
During 1996, with another hospital stay for Jacob and a few 'niggles' for Nev, we were elated and a little worried when I became pregnant with our third child. Dr Whight performed a foetal echo at 20 weeks and we were immensely relieved when there was no evidence of abnormalities.
On the 25 August 1998 Jacob was again admitted to the Prince Charles Hospital for catheter studies. He was by now so familiar with the hospital and staff, that he would play right up until he had to have his wash for surgery, and not worry about anything. He left that to his parents.
On the 22 February, 1999, Jacob again enjoyed catching up with the staff of the Paediatric unit for his next operation. Now he was six years old and had no fear because everyone had always been so caring and friendly. We were hopeful Dr Pohlner would be able to do a Fontan operation but due to complications a Hemi-Fontan was the best option. In intensive care we knew Jake was fine after he was taken off the ventilator, because when his requests for water were refused, he asked every doctor (by name) for chocolate milk instead! Our Prayers were answered when he made a fairly uncomplicated recovery.
During the hospital stays Jacob really got to interact and become friends with the other children in the unit. Sadly, some of the children we had got to know over the years through the hospital stays or through contact with other families in the support group Heart to Heart, lost their battle to survive. We prayed for the families of those who had suffered the terrible loss of the precious children. We tried to answer Jacob's confronting and unsettling questions as best we could and we continue to pray for those children in God's care.
July, 1999 we bid a heart wrenching farewell to everyone to move to Sydney! Dr Whight made arrangements for us to see Dr Cooper at Westmead Hospital. Jacob decided to meet Dr Cooper sooner than expected when he was admitted to Westmead Emergency unit with sats of 60% because of flu and asthma complications. For the first time in his life I had to leave him in hospital alone, because Sarah and Matt were very sick and Nev wasn't able to take time off from work. I just came home late at night and cried!
On 9 November 1999, Jacob was again admitted to the New Children's Hospital Westmead. Dr Cooper not only performed a Catheter procedure through Jacob's groin, but also his arm and a transeosopageal echo (down his throat). This operation took two hours before he was wheeled to ICU. Dr Cooper was able to pass on the information to Dr Whight and Dr Pohlner. This great co-operation between the cardiologists and surgeon in two states was brilliant and afforded the best possible care for Jacob!
Five weeks after this operation, Jacob experienced excruciating pain in his groin where his catheter had been done. Dr Cooper asked us to meet him at the hospital Emergency unit and an ultrasound revealed a large effusion on the hip with referred pain. A decision to operate to drain the fluid from the hip was deferred after blood tests revealed it wasn't infected. After examination in the fractures clinic the next day, an operation was ruled out with the problem expected to resolve with rest.
We made arrangements to fly back to Brisbane for Jacob's next operation. On Wed. 19 April 2000, Jacob was excited when he saw Dr Whight, Dr Pohlner, Dr Avery, nurses who had been with him through many of his other hospital stays and all the staff who create such a friendly environment. The beautiful new ward was an added bonus.
On Holy Thursday, 20 April, Jacob (now 8 yrs) went to theatre at 7.30am and
after praying and waiting anxiously for eight hours, we received a call to
come to ICU. The relief we felt when we received word that he was fine was
phenomenal.
He was expected out of theatre in the next hour. Lyndall (social worker) was
wonderful and came to sit with us in the ICU waiting room. Jacob came out
of theatre at 4.15 but was still bleeding.
Dr Pohlner told us it was a big operation because he had to do two operations in one. First he'd made a thoracotomy incision under Jacob's left shoulder blade to repair his coarctation of the aorta and to free his left lung which had adhered to the chest wall. Then they had to turn Jacob over to open his sternum to operate in his heart. A fenestrated Fontan was successfully completed among other things. During closing they shaved down his sternum bone because it stuck out sharply after previous surgeries.
In Intensive Care, Jacob required a transfusion because he was still bleeding. Our precious son had two wounds, three drains and even more life-saving equipment attached than we'd seen before. Although Jake was unconscious, stroking him and talking to him helped us deal with seeing him in this state. We felt reassured that he was in the best possible care and left him at about 8.30pm.
At 11pm we received an urgent call from Intensive Care to say that Jacob needed another operation immediately as his lungs were full of blood. We raced over and managed to kiss Jacob as he was wheeled into theatre again. Jacob came out of theatre at 2.30am Good Friday morning. Dr Pohlner had managed to stop the bleeding which wasn't from the coarctation as suspected but from the vessels cut when freeing his lungs. Words can never adequately express the depth of our gratitude to Dr Pohlner and his dedicated team for saving Jacob's life yet again.
Jacob was still on blood and blood products at 7am but the figures were a lot better and drains just taking off normal amounts. At 8.30am they decided to rouse him to consciousness. Thankfully he responded well. He immediately tried to talk and gagged on the intubation tube. He was extubated at 9am and did well. We were elated and there were lots of hugs!
Easter Sunday saw Jacob in the high dependency unit with the tooth fairy visiting as well as the Easter Bunny! He experienced a few more complications with his lungs, fluid retention and INR levels and had lots of blood tests. Then Jacob made startling improvement on 26 April. He got his pacing wires out, took off his oxygen prongs and nearly ran to the playroom. He didn't look back. Jacob felt well enough to go home on 29 April 2000. On 5 May, Dr Pohlner and Dr Whight gave us the all clear to fly back to Sydney. It was deeply moving to say goodbye but with grateful hugs we left to go prepare for the journey home.
Jacob now had oxygen sats in the low 90s, had an appetite for the first time in his life, grew a few centimetres and gained a kilogram quickly. He had renewed strength.
2001 was a great year for Jacob as his asthma improved, he started running around and had more energy. He still suffered headaches and some chest pain but for the most part felt better than he'd felt in his whole life.
It's now October 2002. Sarah has had a precautionary echo which detected an abnormal formation of her mitral valve. It is not causing real concern at this stage, but requires monitoring. Nev is due to have surgery in a few years to replace his aortic valve again and is on yearly checkups with his cardiologist.
Jacob is having chest pains and complains of headaches. He has recently worn a holter monitor to help determine what is causing the problems. Meantime, we've just celebrated his 10th birthday with a great big party and ice-skating. We were really worried at first about ice-skating because Jacob is on warfarin which is an anti-coagulant. A bad fall or cut could be dangerous. However, Jacob wanted to have a go so we decided to be positive. As Jacob was struggling to stay upright on the ice, his good friend skated over and said, "Just believe in yourself!" Suddenly Jacob puffed up with confidence and he was off. With just one fall, he's looking forward to doing it again!
Despite the ongoing vigilance we act positive and feel we have been truly blessed by the level of medical technology and care, and look forward to the future with anticipation and hope. So many people have walked our journey and helped us through friendship and support! To all the staff of the Prince Charles Hospital you have served with honour and proceeded with excellence, you have our heartfelt thanks forever. We also extend our thanks to the other doctors and medical personnel who have cared for Jacob through the years. Thank you to all the remarkable people who have touched our lives so profoundly!
With love and thanks,
Terri
Last Updated: October 2003
Last Reviewed: November 2003
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