An open letter to legislators: William's Story

William was born at 26 3/7-weeks gestation at Dartmouth Medical Center in Lebanon. His early arrival was due to no known cause - he is my second child, I never missed a prenatal check-up, I don't smoke, I don't drink and I had plenty of rest and followed good nutritional rules for pregnancy. Despite our precautions, William was born by emergency cesarean at 2:14 a.m. on April 4, 2002. His due date was July 8, 2002.

Needless to say, William had many complications. He went into almost immediate respiratory distress despite two steroid shots given to me during the week before his birth. William's lungs were not fully developed and he needed to be immediately intubated.

He was placed in the neonatal intensive care nursery at Dartmouth and it was some weeks before my husband or I could hold him.

The next 4 months were difficult. We live in Hooksett - a good 75 miles from Lebanon. We also have another child 11 months older than William. After two weeks in the maternity ward, I went home without my newborn baby. I spent the next four months driving to Lebanon and trying to help my son get healthy. During that time I still held my full-time job and tried to do work at the hospital. My husband also continued to work full-time and we both worked to give our other son the attention he needed.

William stayed on the respirator for 3.5 months. We were able to hold him for short periods of time only as premature babies are extremely sensitive to touch, light and noise. After all, they are not supposed to be outside the womb so early.

A few days after William was born, we were told that he suffered two brain hemorrhages. The doctor could not tell us how these bleeds would affect William's development. Time would only tell.

On July 29, 2002 we were able to bring our son home on the condition that he have skilled nursing care, oxygen and a heart and oxygen monitor. Dartmouth, Cigna, Interim Healthcare, DHHS and Keene Medical were all instrumental in providing what we needed to help our son develop normally in a home environment.

The hospital environment is very stressful for little babies and their parents - alarms are constantly ringing, nurses are always analyzing data and touching the babies. A home environment, we were told, would help William thrive. The regular routines of a home, including the attention of his parents and brother, would develop William's mind and help him grow.

Despite the nurturing home environment with the expert help of his nurses, William stopped drinking from a bottle. We were told that many premature babies with bronco-pulmonary dysplasia (chronic lung disease) stopped drinking from a bottle after they grew a little because their need for oxygen trumps the need to eat - or so their body tells them. William chose oxygen over breast milk and so we had to bring him back to Dartmouth to undergo surgery and the placement of a gastrointestinal tube. The g-tube only added to the daily complications and stress of caring for William.

During this entire ordeal, my husband and I still work full-time in order to provide a home for both of our children. William cannot attend daycare due to his health complications and the risk of getting sick. Only the nurses can provide the expert care he needs.

In addition to William's lung problems, we have to deal with his premature development. At ten months old in February 2003, William hadn't rolled over, he couldn't sit by himself or blow raspberries -- basic skills any 10-month old is able to do easily.

Twenty months later in October 2004, William still shows signs of oral aversion to textures and gags if a crumb of food mistakenly enters his mouth. The oral motor problems are a direct result of the 3.5 months on a respirator and go beyond just a quick gag reflex. William still has the g-tube since the only food he can eat is pureed to a yogurt consistency. He is fed special high protein formula three times daily to compensate for what he doesn't take orally.

In addition to the oral motor issues, William has very low muscle tone and his fine motor skills, while much improved, are not those of a 30-month old toddler.

Easter Seals has been instrumental in helping us help William's development. His therapist visits William weekly and teaches his nurse and us how to help him develop without putting his lungs at risk.

In the two years since we began receiving services from Easter Seals, William has learned to roll over, walk, blow raspberries, sit in a chair without falling out, put shapes in the shape sorter, identify body parts and some colors, and endure one hour of therapy. He's tired on the days his therapist visits but his love for her is as deep as our gratitude to Easter Seals for providing the expert care our son needs to grow into a normal, active, young child.

In addition to Easter Seals we are fortunate to have the expert nutritional help of Judy Mikami and Kim Lovely from the Bureau of Special Medical Services. Both experts help us understand why William gags on anything with texture and what we can do to alleviate his fears and eventually get him to eat more orally and eventually learn how to bite, chew and swallow.

Despite a BMS limit on the number of visits to three per year, we successfully petitioned Blue Cross Blue Shield of New England to cover ten visits. The logic is clear: As soon as William can eat like a normal toddler the sooner we can eliminate the expensive formula fed to him via g-tube. Unfortunately, the insurance won't pay for the nutritional expertise of Kim Lovely. Kim continues to be involved through Judy, though, simply because she cares about the well-being of our son. It's important to note that Judy is the ONLY feed and swallow expert in the state. See the importance of early intervention to understand why this budget cut is so short-sighted and harmful to our son's development.

Without the nursing care, Easter Seals and the nutritionists William's life and our lives would be dramatically different. We would not know how to help William - we're not medical experts. The ability to treat William in his home environment is both developmentally beneficial and financially beneficial - can you imagine the cost of William's care if he were at Dartmouth for the past 30 months? The four months he was in the NICU cost approximately $170,000.

His hospital stay and the homecare during 2002 were paid for by Cigna and Medicaid. We would not have been able to pay for these services ourselves. In January 2003 my husband's company switched insurance providers and we chose Blue Cross Blue Shield from the two carriers offered. BCBS chose not to pay for William's homecare effective Jan. 1, 2003. As a result, Medicaid picks up the homecare 100% but cut William's hours from 56 to 45. We used to look forward to night-coverage every other week since my husband and I have to feed William during the night and each feed takes 45 minutes. BCBS's decision to not cover William's necessary homecare not only put the financial burden on the state, but also added to the already stressful environment at home.

It's interesting to us that BCBS benefits directly from William's homecare - the homecare keeps William out of the hospital, a cost BCBS would have to pick up.

We would give anything to not need these services. We would give anything to have a healthy son. But, since we're not doctors and we're not millionaires, we need the assistance provided through the government we support with our taxes. I can only imagine what a tax on the system William would be if these experts were not vigilant in working with him to develop normally, eat normally, and grow to be a normal child. Early intervention is critical to ensure William has a healthy, normal life.

I hope you will keep William in mind when you are asked to decide which programs should be cut or decreased. William did nothing to deserve what he's going through. We did nothing to cause his premature birth. Early intervention is a cost effective way to ensure William gets healthy and does not need additional, more expensive services when he's older.