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Our introduction to this world of CHD began at 20 weeks gestation with my husband Mike, our son Tyler and myself unleashing a flood of tears at the unexpected diagnosis. We were told to do what it takes to make sure the pregnancy went full-term. We took our sonogram photo of our "Puddy" home and introduced him to my sister and her family and my mom. With careful precautions to not overexert myself I kept to the more sedentary aspects of my position at a genetics lab. Puddy and I grew together with great love and girth. I contemplated putting a "wide load or oversized load" sign on my backside but settled for announcing my approach with a few articulated forklift sound effects. Despite our efforts, Puddy tried to make his debut twice before actual birth. One required only a shot and the other a four day hospital stay to stop labor. As a special treat I was given an accidental extra bolus of magnesium sulfate which felt as if my body were rapidly igniting into flames at both ends, accompanied by temporary paralysis from the waist down. Needless to say my husband became very active in monitoring all equipment and the substances that entered the IV, which carried forward during our son’s approximate four months of hospitalization.

On Feb. 29, 2000 (a leaper of the new millennium) at 1:15 p.m. our beautiful son, Vance Jaxon Chapman, came bellowing and flailing into this world with a fighter’s disposition that still amazes us today. His diagnosis was Hypoplastic Right Ventricle with Pulmonary Atresia, Tricuspid Atresia, Atrial Septal Defect (we have since learned it is called Pulmonary Atresia with Intact Ventricular Septum or PAIVS). And so our CHD journey began in the Enchantment State of New Mexico. (yes it is one of the fifty states)

At two days old our son underwent the classic B-T shunt which was the first in what was supposed to be a series of three operations. The surgeon anticipated a one week recovery until we began to hear about the air sacs in his lungs beginning to collapse. It seems the vagus nerve was bruised during surgery and his right diaphragm was paralyzed, causing respiratory problems. Only time would tell if it was only a temporary condition and thankfully it was. At two and a half weeks (still in the hospital) we began to hear about circulatory overload and symptoms of congestive heart failure. At three weeks Vance underwent a second surgery to ligate the PDA. From a posterior view our son looked like he had been cut in half. Recovery began to go well except for reflux and growth issues. This was promising as we were beginning to feel overwhelmed by this "after the fact" approach to giving us information on the possible effects of the surgeries. We were given a quick training course for all of our son’s needs and at six weeks of age, on his twin cousins’ birthday (birthdays seem to play a role in our adventure) Vance was released to go home to our nurturing, loving care. Oh happy day! We took him home on oxygen, medications and a very long "nose noodle" (n-g tube).

We won’t mention all of the follies, frustrations, emotional highs and lows that ensued (as we hadn’t mentioned those during the first six weeks in the hospital after birth) until we developed a sort of routine because then we would need to follow the likes of Patricia Cornwell and produce a series of novels. But let us give you an idea of the challenging feeding schedule that exhausted two gainfully employed parents and left us very appreciative of the help we received from Vance’s doting big brother, Tyler.

Midnight: Vance goes to dreamland. Last feed was 9:00 pm.

3:00 am: prep feed approx. 10 min.

3:10 am: slowly, manually syringe in feed over a one hour period (1-2 mls per minute, actually watching the digital clock)

4:15 am: clean up after feed

4:25 am: go to bed

6:00 a..m. : Get up and prep feed this time with syringe and bottle.

6:10 am. Bottle feed Vance as he is already up for the day and then syringe in the rest for the remainder of the hour feed and continue cycle every three hours.

The prep and clean-up times could tend to become lengthy the more sleep-deprived we were. This continued until Vance decided it was time to come off the nose noodle by continually pulling it out after we kept reinserting it around 8 months of age. Compound this routine with frequent (4-5x a day) full force vomiting out the mouth and nose, continuous choking and gagging, and a boatload of laundry. We felt he could win a medal at the Olympics for hurling. Later this routine would seem a walk in the woods.

Vance was always just under the fifth percentile in height and weight but he followed a normal growth pattern and developmentally was a little slower in mobility but he modeled after his healthy, very academic brother. He inherited the weirdo or funny gene from my side of the family and always had a smiling, laughing face and a great sense of humor. He maintained a fast pace at Indy speed and kept us going day and night. He rarely took a daily nap and if he did it was a 30-60 min. power nap. Our energetic, fun-loving busybody. Our good-natured, mischievous "little man" as nicknamed by his brother. He was a sort of pale color and we felt that all the babies we saw in public were a little too pink (lol). He ultimately was walking along the furniture, chasing the dog ( always dumping the dog’s food and water no matter where we hid the bowls), playing games, just doing all the regular toddler stuff and became quite the "social eater". If you had food, you had better share with him, even if he had just eaten a meal. He brought tremendous joy to our hearts and to our families hearts as well. Spoiled by his grandma, aunt, uncle and four boy cousins who became a second family to him. (Tyler was close in age to his twin cousins and when he was little he thought they were his brothers and since that time have been called the "boo brothers" or boos.) Our Vancey pants was a keeper :)

At seven months of age, Vance’s cardiologist retired. Although we would later find that we weren’t given complete information in regards to our son’s condition and that he did not receive the standard treatment at the appropriate times, we will convey that this cardiologist held a great inward compassion for his patients whom he treated as children and "as a whole". As we shook hands and wished him well, he told us "it was a privilege to care for Vance". This may have marked a turning point for our lives as in the following months our journey took on a different tone. Many parents describe their tumultuous experiences as a "roller coaster ride". Little did we know that our ride was at the peak in height and that our family would soon plummet into catastrophe and that it would take about a year and a half before we would come to level ground--- only with the encouragement, prayers and enormous support of many loving family members.

The cardiologist who took over the course of treatment for Vance had a very different, seemingly flippant manner and managed our son as a cardiac case. With contradictions between visits and disturbing comments made during appointments, we began to become very uncomfortable with the competence and knowledge displayed by this "specialist". We knew that our son was in trouble, particularly when he told us Vance was inoperable for the bi-directional Glenn and was shocked by the pressures taken during catheterization.

With faith and magic, an incredible sequence of events were set into motion that we fully believe saved Vance’s life. It began with one phone call from Mike’s boss who related that his wife found out about a PBS special (Affairs of the Heart) that was to air that evening. This show featured two prominent physicians at Children’s Hospital of Boston. We began our correspondence and after review of information received, we made the decision to head for Boston even though we didn’t have the finances to do so. The old motto "where there’s a will, there’s a way" is true and our message of help was answered by the generosity of our employers, co-workers, family, friends, classmates and communities. What a blessing to be surrounded by such "angels" in our lives. The insurance company proved to be of an opposite, lower creature with a little fiery position if you catch our drift. Let’s just say that through all of our son’s pain and suffering they made it clear that their money took priority over Vance’s health and they used pretty devious tactics to do what they could to terminate our insurance coverage of which they succeeded.

On May 9th (Mike’s birthday) we set out for Boston. On May 15th the unthinkable happened.Vance went into cardiac arrest during a catheterization and due to the complications of his condition suffered a stroke that damaged the entire right hemisphere of his brain (couldn’t say every single cell but diffuse down to the basal ganglia) and areas to his left hemisphere as well. He was placed on ECMO, a monstrosity of a machine to see, and our nightmare began. He was comatose for two weeks and the prognosis was poor. If he were to follow what 95% of children with such damage do, he probably wouldn’t be able to crawl, walk, talk, eat, grave concerns about vision and hearing and profound mental retardation a possibility. Quality of life questions plagued our minds.

During our two months of living out of the hospital, we learned, read and discussed with physicians as much as we could about Vance’s heart defect. We connected with a support group and talked with many parents from around the world. We had been given minimal information from the NM specialists. We were devastated to find that our son was a victim of location and the power of the HMO. Had he been born in Boston or referred to Boston soon after birth, we have no doubts that he would be the normal toddler we had brought to the hospital. Our son was "practice" for the NM surgeon and paid a monumental price in the health plan’s efforts to make their hospital " the Heart Hospital of NM".

Unfortunately, Vance still required surgery and placement of the g-tube. He appeared to be blind, had involuntary movements (athetoid movements) in his face and arm, did not seem to recognize his family, cried frequently, could not move his left side, could only lay in bed and hold a toy to his mouth and occasionally kick his right leg. To add insult to injury we could not take Vance home due to New Mexico’s high altitude. My family graciously packed up our home, placed our belongings in storage, found our dog a home and did so much more than we could have imagined. Mike’s mother and family welcomed us into their home with embracing arms as we needed to live at sea level (had significant loss of income as I needed to quit my job to become a full-time mom). Vance was transferred to the Children’s Hospital of Seattle on July 5th (Tyler’s birthday) for intensive neurological rehabilitation which he did not receive as he did not meet their criteria. We took him to our temporary new home in Lynden, Washington and began a new life for our whole family. (Returned to Boston two weeks after the Sept tragedy for surgery –learned how lucky we are to have each other as family). Mike’s many family members have given us so much strength and loving support that enabled us to handle the everyday hurdles. My family also gave us much strength and loving support from afar and helped to keep our sanity intact.

Vance’s initial progress on the road to recovery was excruciatingly slow. We had to turn him frequently at night because he could not shift positions and would cry. He was on continuous drip pump feedings day and night. His life consisted of lying in bed to lying on padding on the floor in the living room to lying in the stroller. He had tactile sensitivities, began the reflux again and it seemed an eternity before we heard him laugh again but that was the sweetest sound we had ever heard. Our miracle boy has been such a fighter (doesn’t read medical journals so does his own thing) and like his brother is a great gift to our family. In the almost two years since the stroke, Vance has made marvelous gains. We think that a good portion of it related to weaning him off Phenobarbital; however, some physicians may think otherwise. Mostly due to wonderful therapists who enjoy their work and children immensely. He can crawl up a storm, stand with support, babble some sounds, still g-tube fed, has vision impairments, auditory processing questionable, cognitive capabilities of a six-month-old, loves his baths, family and toys. He even has his silly, fun, humorous personality and still doesn’t sleep much. He will return to Boston this summer/fall (probably on another birthday) for hopefully a last surgery. He has taught us so much about resilience, hope, persistence and most of all patience. He’d be a great doctor :0)

Life Lessons: We would encourage parents to get a second opinion from the physicians with the greatest knowledge and experience on heart disease and take their child there--no matter the financial cost. There is no price on your child's life.

Believe in your children and love them with all of your heart. Let them show you what they can and will do. There are many mysteries in medicine.

A good doctor will say "I don't know but I will find out". If you find out about something other parents suggest or from research on your own, the good doctor will say "Here is the theory or thinking behind that" and then he will tell you his views and let you make decisions. The good doctor's ego was left at medical school and he knows the parent is the expert on their child. The good surgeon will tell you the statistics of his surgeries (quantity and survival rate) and he won't say "some do well, some die on the operating table".

Appreciate everything you are given and what you go through and have fun, fun, fun.

Thank yous: with the Oscars coming up we would like to give our own Oscars (except we will call it Puddys) to deserving individuals outside our family circle who are always welcome in our lives as family:

And the Puddy goes to:

Dr. Grambort and Selena: the best pediatrician ever and his equivalently outstanding nurse

Rosemarie: the phenomenal home health nurse whose salary will never match the care, compassion, knowledge and protection she gives to "her kids". Your wit and boisterous laugh will remain with us always, including the lovely English accent

Bossman Grashuis and his wife Laverne who gave us the chance to take our son where he needed to be and for looking out for us slugs

My Lovelace family, Chelwood Elementary School, our neighborhoods, co-workers at Your Cad Drafting (how's that for a plug) and many friends we haven't met for giving us a way to go East and for giving us the courage to do so

To every single person and staff member we met in Children's Hospital of Boston---we would have to write a novel to tell you how fantastic this place is and how each child holds a special meaning. Go to Boston. To Dr.Jonas and Dr. Geva for teaching us that children matter in physicians' eyes and that you can never be too busy to help a child. To Dr. Geva for caring for children with the deepest compassion --for keeping watch over our children day and night and for being there for us every day and even now from afar. To Carmen the resource wizard, Nancy for listening daily to keep us a family, Reverend Mary for hope and prayers, and the most wonderful nurses who seemed to always be holding a baby while getting the work done. To Marie--we'll take good care of your baby :)

To all the current therapists, nurse Jane and the friendly faces in Lynden "little Holland" where the most beautiful flowers and people grow

To all the support groups on-line who help parents like us find our way in our new world

Sandie Chapman

Copyright (c) Sandie-2003

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