Families for HoPE, Inc.

Bill and I were married in September 2001, just three days before September 11^th.  We had decided to wait one year to get pregnant, and sure enough, I discovered I was pregnant on the day of our first wedding anniversary.

My whole pregnancy was very healthy with hardly any morning sickness.  At 39 weeks gestation, I was measuring too small so my doctor ordered an ultrasound.  She decided that it was time to deliver the baby because he was just too small and not gaining weight for some reason.

Our first son, Carter Wiseman was born June 10, 2003, weighing 4 pounds, 14 ounces.  It was then that we learned that things weren’t right.  Carter had a small head and was missing ribs and vertebrae.  His thumb was attached only by a small piece of skin.

We were told that they were 99 percent sure that he had Trisomy 13.  If he made it out of the hospital, their advice was to take him home and love him.  One week later, we learned CPR and brought Carter home.

When he was still alive two weeks later when his chromosome test came back as normal, they performed an MRI and diagnosed Carter with semi-lobar holoprosencephaly.  It was then that we discovered the Carter Centers for Holoprosencephaly and sent them his MRI for review.  Ironically, we had named him Carter!

All of the local doctors told us that Carter’s outlook was not good.  They said he would never really do anything and would be a “vegetable”.  The best news we received was from a neurologist who said, “I just don’t know what he will do.” That statement at least gave us a little hope, but the neurologist soon retired from his practice.  There was a shortage of pediatric neurologists in our area, so we were told that Carter couldn’t be seen by one because he was not having seizures.

We took Carter home, and we spent all day and night trying to feed him, and we always fought with dehydration.  He also had colic and would only sleep for 30 minutes at a time.  On one occasion, he screamed for 36 hours straight.

When Carter was one year old, he underwent two hand surgeries.  On the left hand, they removed his hypo plastic thumb and turned his pointer finger into a thumb. On the right, they wrapped a tendon from his middle finger around the thumb to strengthen it.  Today, he now has full use of both hands.

Because his neck was kinked to one side, Carter was also treated for torticollis, a deformity of the neck in which the head tilts toward one shoulder while the chin simultaneously rotates toward the opposite shoulder.  Treatment involved physical therapy where Carter would scream each time.  At first, the screaming was believed to be behavioral; however, his neck wasn’t getting better.  Another MRI was performed, and it was discovered that it wasn’t torticollis after all.  Instead, they discovered a bone connecting his neck to his shoulder blade, and he was then diagnosed with Sprengels Shoulder and Klippel-Feil Syndrome.

We still were battling the issues of feeding and sleeping.  The nutritionist said Carter needed a feeding tube, but the doctor said he did not.  Thus, he underwent numerous sleeping and swallow studies.

On Halloween when Carter was 2 years old, we took him to the emergency room for dehydration, and they decided to admit him for observation.  While in the hospital, Carter had three grand mal (tonic-clonic) seizures requiring so much medication that his body shut down.  Overnight observation turned into a one month hospitalization with complications of C-Diff, a blood infection, and increased fluid surrounding his brain requiring a hole to be drilled into his head.

After he had finally stabilized and recovered, a feeding tube was inserted to help with hydration and nutrition. Because he had the three seizures, Carter was finally referred to a neurologist who prescribed a medication to help him sleep, and we all slept for the first time in two years! Not surprisingly, Carter began thriving!

Carter has vision problems and goes by sound. Around 3 years of age, we took him to see a doctor in Detroit who diagnosed him with another syndrome, Optic Atrophy. We were told that he will slowly lose his vision. This new diagnosis led us to question of, “Where did he get all these syndromes?”

After consulting with a rare syndrome specialist at the University of Michigan, it is believed that Carter has Aicardi Syndrome because every anomaly he has falls under this syndrome; however, it only affects boys in very rare cases. Again, nothing abnormal has been found in his genes or chromosomes. We have been told by many doctors Carter is just an act of God, a mystery. Although we have stopped searching for answers, we live in fear every day of losing Carter.

Carter and Austin

He started school full time this year and loves it, especially riding the bus!  Everyone who meets Carter instantly falls in love with him, so he is spoiled at school everyday.  He is not a morning person but is yelling and giggling by afternoon. He loves the Wiggles and Jack’s Big Music Show, but he doesn’t like people singing or music class at school.

He loves rough-housing with dad, swimming, and bath time.  He also laughs when people cough or sneeze, and his giggle completely lights up a room!  Although he cannot stand, sit, or walk, he can say “Mama”. In spite of it all, he has a huge personality and is an inspiration to be around. 

Carter became a big brother this year when our son, Austin, was born, and Carter showed his jealousy of his brother just like any other typical 4 year-old.  We thank God that Austin is a healthy baby, and we are excited because Carter and Austin both have a lot to teach each other.

Life is easier with Carter today than it was in those early days, but we still have struggles.  He is getting bigger and harder to lift, and he still has small seizures.  When he gets the common cold, it is so much worse for him, and he requires a lot of attention.

In the state of Michigan, it is hard to get the help you need.  The things Carter needed early on were only found through word-of-mouth by other parents or my grandfather’s nurse!  We are trying to find the right people to fix this problem, and his school Lincoln Development Center is helping to fight this battle.  Unfortunately, when you are trying to keep your child alive, there is no extra time to search for services to help you live your daily life.  Our hope and prayer is that holoprosencephaly will get the attention it needs so other families will not have to go through all the struggles we have.

Carter will be 5 years old this June.  Life with Carter was something we would have never imagined would happen.  He has taught not only us but others so much about life, and we are so proud of him. The small things he does are so amazing, and he has become much more than just a “vegetable” as he continues to touch the hearts of everyone he meets.

"Soon they'll know the privilege given, in caring for this gift from heaven.  Their precious gift, meek and mild . . . He is Heaven’s Special Child”.  (author unknown)