This is Charlotte.

Charlotte, Christmas 2003, 19 months old

And this is the story of her life so far...as seen through the eyes of her mother.

BIRTH

Charlotte was born at 1:11 AM on May 16th 2002 at Beverly Hospital, Massachusetts. Labor and delivery were uneventful, except for a prolonged pushing period (3 hours), and the fetal heartrate was strong throughout. Still, upon birth it became clear that Charlotte was in distress. She was completely limp and made no attempt to breath. She was resuscitated at 4 minutes of life and intubated at 8 minutes of life. But at 20 minutes of life, Charlotte began to seize, a sign that she had been deprived of oxygen long enough to cause serious consequences. It is still unclear how and when Charlotte's trauma began, but sometime during the last 12-24 hours of her life in utero she suffered asphyxia. Within hours she was transferred to the Neonatal Intensive Care Unit of Children's Hospital in Boston.

Charlotte, 1 day old at Children's Hospital in Boston, the first time a really saw her.

At 6 pounds 5 ounces, Charlotte was not a large newborn, but she seemed so by the standards of modern NICU where many of the occupants are tiny preemies no bigger than 2 or 3 pounds. Under a tangle of wires and tubes, she was pink and plump by comparison. And yet her prognosis seemed worse, because the damage was already done and could not be reversed. Each day brought more news verifying the injury to her brain--EEGs showing "burst-surpression" patterns, MRIs significant for "elevated lactic acid and alanine peaks"--much of which we could not even comprehend at the time. On day four Charlotte's father and I met with a Neurologist, Dr. Janet Soul, to hear Charlotte's prognosis based on her second MRI. The news was not good. The answers to basic questions like "will she walk? will she talk?" were ominously vague. Because a baby's brain is so plastic, there was always a chance she would be normal, but it was slim indeed. Charlotte's brain injury was consistent with significant disabilities, both motor and cognitive.

Despite her poor prognosis, Charlotte recovered quickly in the NICU. On day four Charlotte was breathing well enough on her own to be extubated. She drank from a bottle for the first time on day 7 and learned to breastfeed on day 8. On day 11 she came home.

MILESTONES

In the first few months of life, there was very little evidence of Charlotte's difficult start. She fed well and her weight jumped from the 25th to the 50th percentile in the first month. She was very alert and had only mild (if any) delays in vision tracking and head control. She smiled for the first time at 6 weeks and was smiling on a daily basis by 9 weeks of age. She was batting at her mobile by 9 weeks of age and effectively reaching for toys by 3 months of age. She was from the beginning a mild-tempered, easy-going baby and very content, so the fact that she wasn't as physically active as some babies didn't really seem all that abnormal. She certainly kicked her legs when she was excited, and she was more cooperative in tummy time than some typically developing children. Still, her legs and arms always felt a little stiff.

Charlotte at 8 weeks

Rolling was Charlotte's first big physical challenge. She was rolling both ways by 7 months, but it took her a couple more months before she could do it with ease. Difficulty with rolling was the first obvious sign that Charlotte had issues with motor control, but there were more subtle signs that were apparent to her PT, such as the delayed integration of infantile reflexes and the delayed emergence of certain postural reflexes.

Charlotte at 9 months

Weak trunk muscles and delayed protective extension (the reflex to catch yourself when you fall) also made it difficult for Charlotte to sit independently. She could sit for several minutes at a time by 9 months, but only if she stayed very still and didn't try to reach for toys. Fortunately, by her first birthday she was able to play independently in the sitting position without support.

Click here to see Charlotte drumming at 10 months. (Be patient. It could take up to 2 minutes to download.)

Charlotte at 19 months

Charlotte began pushing up onto her hands and knees spontaneously around 12 months, and began crawling backwards shortly thereafter. She was almost 16 months when she took her first forward crawling steps and finally achieved mobility. Around the same time, she started pulling to stand. It takes great effort for her to stand, however, and she still only does it on occasion.

Click here to see Charlotte taking her first steps in water at aquatherapy when she was 12 months old. Turn down the volume first. This video is loud.

Charlotte at 20 months

Recently Charlotte has started learning to use a walker. She can take a few steps with walkers designed for typical babies, but it is difficult for her to control them. This one is much more stable, and she loved using it from the very first try. Using a walker is building up strength in Charlotte's legs, and it has given her much more confidence in standing.

Cognitively, Charlotte appears to be right on track, although she does have some language delays. She is a little behind in fine motor skills as well, but is making great gains with therapy. She is warm, intuitive and downright charming little girl who wins hearts wherever she goes.

THE DIAGNOSIS

We were given no name for Charlotte's prognosis at children's hospital, but, through Internet research, it did not take long to match the symptoms to the syndrome. It is Cerebral Palsy (CP). And the first time I read the words, I felt my blood turning to ice. I did not know what CP was, but I knew what it looked like (at least I thought I did)...like my worst nightmare. Now I know better.

Charlotte at 11 months

Cerebral Palsy is umbrella term referring to any kind of motor disorder or difficulty related to a static brain injury (as opposed to a degenerative neurological disease). These motor disorders vary tremendously based on the type and severity of brain injury. One of the most typical manifestations of CP, however, is excessively tight muscles or "spasticity"--particularly in the arms and legs. Charlotte's diagnosis is Spastic Quadriplegic Cerebral Palsy, meaning she has spasticity in all four limbs. Although most people associate CP with severe disability, given Charlotte's development so far, it is likely that she will have normal enough motor function to lead a full and independent life someday.

The definition of CP does not include cognitive impairment, but some children with CP have mental handicaps or learning disabilities that are also associated with the early brain injury.

EARLY INTERVENTION

Charlotte was 2 weeks old when a representative of Early Intervention, Ann Hoar De Galvin, a registered nurse, arrived at our doorstep. We had not invited her, but we were very happy to see her. In a perfect world, someone like Ann would make regular visits to all new mothers to offer comfort, advice and guidance. In the real world, no child with a difficult start can afford to do without her. In retrospect, it is shocking how little we knew, how many serious health problems can develop in a CP baby, and how much could have gone wrong. We are lucky in that Charlotte has always been a very healthy baby. Still, just by offering to help navigate this new world, Ann did much to heal us as family after one of the most shattering experiences that new parents endure. Ann has also been instrumental in keeping Charlotte up to speed on cognitive, self-help, and social skills, both through her weekly visit and through a developmental play group that she leads at the Early Intervention center.

Charlotte at 8 months, Physical Therapy with Cheri Wemmer

By three months of age, Charlotte had started weekly physical therapy with Cheri Wemmer, a pediatric therapist specially trained to help children with neuromuscular disorders. Cheri gave us specific instructions on how to help Charlotte, mitigating in-part those overwhelming feelings of helplessness that an incurable medical problem generates. Now Charlotte has PT twice a week with Cheri, once at daycare and once at home. Cheri has been a continuos presence in Charlotte's life since she was just weeks old and can share in the credit for Charlotte's gross motor achievements so far--which are fairly impressive for child with Cerebral Palsy. Cheri also runs a swim group at the local YMCA that Charlotte has participated in since she was 12 months old. It is the highlight of Charlotte's week.

Click here to see pictures of Charlotte in aquatherapy.

Along the way, we have worked with 3 different Occupational Therapists and 2 Speech Therapists--each of them talented and bright and full of enthusiasm for helping children get a good start on life skills. Currently Charlotte receives home visits for occupation therapy and speech therapy once a week. This winter she will also start hippotherapy (or therapy on horseback), a service that is available through Early Intervention and does wonders for children with all kinds of disabilities.

Charlotte at 10 months with Kim Marks Occupational Therapist

Charlotte's therapists use creativity to make therapy is seem like play, but that doesn't mean it isn't serious business. Virtually every skill that Charlotte has is hard won though strenuous effort and repetition. Without a doubt, the services of the Early Intervention program have helped Charlotte to far surpass the expectations of the medical professionals who cared for her in NICU.

Our experience with the Early Intervention defies all the negative stereotypes surrounding government services. This is NOT the Registry of Motor Vehicles. This a team of skilled professionals dedicated to serving the most vulnerable members of our society at one of the most critical times of their lives--the beginning.