Jesse's arrived after an emergency caesarean because of a failed induction. His chd was detected at birth with observed cyanosis and a systolic murmur. An echo showed pulmonary valve stenosis. At 2 days he had a modified left Blalock-Taussig shunt and a pulmonary valvotomy. He was ventilated for 3 days and his recovery was good. Jesse was slow to feed and gained weight slowly. He was started on lasix because of slight chf and his feeding improved. He was discharged at 5 weeks into the care of his parents. Both parents have disabilities and there were concerns about their ability to parent so the family were placed with a residential child care agency for observation and training.

Concerns continued about Jesse's parents skills to manage his condition and provide adequate care. He was collected each morning and placed into a local child care agency with close supervision of a child health nurse. His parent did not like the intervention and concerns of those involved with the child and planned to move away from the area. His grandmother who was very concern about his colour took him for a weekend and took him to hospital to find he was in serious congestive heart failure. With treatment he recovered and a week later he was taken into custodial care.

After 4 weeks in residential care he was place in our care when he was 4 months old. He arrived one VERY hot summers day along with all his possessions that had to be wash, sterilised, disinfected and put away. I had only 4 days warning that he was arriving leaving very little time to prepare. It was a busy first week to say the least and I waited patiently for my life to get back to normal and I'm still waiting 11.8 years later.

Jesse was very cynosised. He was a poor feeder. We battled to get 10-15 mls into at each feed. He sweated profusely and still does. I had been warned he wouldn't survive his first year and was a high risk for SIDS. We were told he would be severely physically and intellectually disabled. If he did live then he would need surgery when he was 4 (fontan) to repair his chd. At 6 months his vaccination wound formed into an abscess that required drainage. He developed some chf after surgery and was treated with lasix. He later started vomiting and being very drowsy and was found to be in toxic levels of digoxin. This was resolved by withholding the next 3 doses and lowering the maintenance dose.

I noticed on the day he was placed with us that he wasn't using his right arm, his right foot was pointed down and he did not move his right leg well. He was a very floppy baby and struggled to sit at 9 months, crawled commando style at 16 months and walked although very unsteadily at 20 months. He was diagnosed with cerebral palsy after he 2nd stage repair.

As I had worked in early intervention with a disability agency and I followed an intensive daily therapy programme with Jesse using the Hawaii Early Learning Program (HELP) I structured most days with gross and fine motor, expressive and receptive language, cognitive and self help skills and activities. This help to develop his skills although he continue to show an erratic profile in his overall development.

At 10 months at a regular PC appt a Cath was scheduled. The cath showed pulmonary atresia, intact ventricular septum dilated RA, hyperplastic RV. He needed immediate surgery we were scheduled to fly to Melbourne 2 days later. What a shock to the system for us both. That was further complicated when on the day of his departure he woke with a cold and the surgery was delayed for two weeks. I was so very anxious and tearful. This is when I made contact with our local support group Heartkids and receive the much need support to get through this two long weeks. I remain deeply grateful to the wonderful parents who supported us through Jesse surgeries and helped to retain some of my sanity.

Jesse's 2nd Surgery at 11 months was in the Melbourne Royal Children's Hospital done by Drs Roger Mee and Tom Carle. He had RV muscle resection, pulmonary valvotomy, transannular patch, atrial septectomy. There were minor complications of a collapsed left lung and blood clot in left leg. The blood clots required an embolectomy 3 days later with good results. Jesse was discharged five days after surgery.

Jesse made good gains after this surgery. He started to catch up with his developmental skills. We had 2 years of near normal life before Jesse started to show signs of congestive heart failure again. He was rushed to hospital one evening when I heard him coughing and went in to find him very cynosed. His sats were at 62. The next stage of surgery was booked. This time we had three months to wait. Again HeartKids provided the much needed ear and shoulder as I battled to come to turn with the knowledge that I would once again be handing my beloved child over to surgeons for complex open heart surgery. We did not know if Jesse would be having palliative surgery (Fontan) or a full repair. Neither did the surgeon. It depended on the viability of his right ventricle and as it was a just borderline size they would not know until the surgery was underway.

Jesse's final stage of repair was at 3 years 3 months in Melbourne RCH done by Dr Tom Carle. This was a general overhaul of the right ventricle including a tricuspid valvotomy, septal leaflet tricuspid valve mobilisation, infundibular and RV trabecular muscle resection, PFO creation, pericardial patch, autologous pulmonary valve monocusp and shunt division. This all means that he had a full repair and the ventricle had been considered to be viable. He sats went up to 99 (and have stayed there ever since) after the surgery. He has had a very successful repair with no medication or exercise restrictions.

On the day of Jesse's discharge the surgeon noted Jesse's R side limp and referred us to the physiotherapy department at the hospital when we returned to Perth. I had been trying to get a professional to see his physical disability for 3 years so I was overjoyed at last that it had been acknowledged. We now started to work with a physiotherapist, occupational therapist and psychologist on his delays and to improve his fine and gross motor skills.

Jesse was a difficult to train toddler!! After his final repair he became the wild child from hell. I believe early on that I was parenting a child with ADHD. His behaviour become increasingly challenging and difficult to manage. At 5 he was diagnosed with atypical ADHD and 1 year later ADHD with autistic tendencies. He was impulsive, hyperactive with aggressive and destructive behaviours. He did not cope with transitions from one activity to another. He had a marked delay in sensory proprioception, cognitive/ perceptual and motor planning skills. He was referred to an occupational therapy research unit for his difficulties and the need for intervention regarding classroom skills prior to entry to school.

Once school started he continued to be a handful needing 1-1 aide time to manage him. He used to run around the top of the desks and leap from cluster of desks to chairs to desks. Very disconcerting for teachers and other children!!. His range of challenging behaviours and learning difficulties create problems for teachers, students, Jesse and ourselves. To give us all some sort of quality of life we trialed ADHD medication to see if that improved his home, community and school behaviours.

We spent many hour fine tuning our behaviour management skills and with medication we gradually started to make a difference to his challenging behaviour. Improved behaviour and medication made a considerable difference in Jesse's quality of life. He begn to achieve and socialise with others. His medication needs to be monitored regularly as he grows to maintain his behaviour and his educational and socialisation skills.

Jesse has learning difficulties but is above the IQ level to be diagnosed with an intellectually disability. He was shifted to an ed support class in year 3 as his difficulty with handwriting and reading started to effect his participation in the class. Jesse has difficulty with sequencing and word finding and this impacts on his language, social and reading and writing skills. This was investigated further and as a result he was diagnosed with global language dysfunction. He is at the 1st percentile in both receptive and expressive language.

The doctors had always believed Jesse non heart related disabilities were a result of a stroke during the first surgery at two days old.. This however was never checked. The speech therapist working with Jesse thought his language difficulties were more symptomatic of a brain injury than cerebral palsy related. We requested that he have a cat scan for further neurological investigation.

Before this was schedule in July 99 Jesse had a series of seizures. The cat scan was done and it showed calcified deposits in his frontal lobe and down the side of his brain. The doctor told us was a result of congenital toxoplasmosis infection (a bacterial infection passed across in utero) and not stroke or head injury related. Now with his ADHD and seizure medication stabilising both his behaviour and seizures Jesse is continuing to make good gains. Because Jesse has frontal lobe damage his behaviour will continue to need both behaviour management and medication to control his adhd/autistic behaviours, oppositional defiance, risk taking and emotional reactions to events. This will be a continue to be a challenge to us through his adolescence. His behaviour is of primary concern with frequent suspension from school impacting on his learning and relationships with others. It limits his independence at this stage as he can't yet be trusted to not meltdown at home and in public.

Jesse has a family history of scoliosis. The combination of this, his shortened right leg and first closed heart surgery he has had a known mild scoliosis for sometime. With the onset of puberty this deteriorated to a moderate scoliosis with kyphosis We will return to the spinal clinic in early 2003 to check the degree of spinal deformity and then either he will be fitted with a body brace or have a spinal fusion. Neither decision will be easy because of scar tissue through chd and the increase risks associated with this surgery. Jesse will not tolerate the body brace well so behavioural issues make the alternative less than desirable.

Jesse's right foot remains problematic and this also may need surgical repair at some point. Jesse is a competent sporty kid who doesn't let to much stop him. He has difficulty running but is a speed/risk taker extraordinaire on anything with wheels. He does backward and forward flips on trampoline. He will stay in the water for hours at a time. Jesse loves all ball sports and has powerful swing and can hit a ball long distances. He has an amazing ear for music. He is able to put a CD in the player and hear the music it for the first time and play along to it with his recorder or harmonica. His current interest is carpentry and finally he has shifted his focus from creative "deconstruction" to construction thanks to a wonderful teacher who has encourage his woodworking skills.

Jesse's current cardiac status is excellent. He has borderline cardiomegaly and his RV is mildy enlarged but functioning well. There is some trivial tricuspid and pulmonary valve regurgitation and no significant pulmonary stenosis. At his annual cardiac check in September 2002 the cardiologist said his heart sounds fantastic and like a normal heart. Jesse will need further cardiac surgery but the expected time for this has been continued to be pushed back as he remains in good health. At his previous PC visit we were told that he wouldn't need surgery again until he was an adult. Jesse is a large child for his age. His chd and other disabilities do not deter him when he wants to achieve. We are very proud of our manchild and all he has overcome.

Copyright(c)2002 - Jesse's Mom

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