| The Insley Family Journal |
| PROLOGUE On 8 December, 2001, we found out we were going to be parents for the second time. In March, we learned it was going to be a boy, just like the first child, William Spencer, who was born on 24 May, 1999. "Spencer" was going to have a baby brother. Later on in March, 2002, we visited a specialist to check out the possibility that the baby Mandy was carrying might possibly have a neural tube defect, specifically spina bifida, a condition involving exposed spinal nerves. In the first four weeks of the formation of a fetus, its spinal column and central nervous system, along with just about everything else, are taking shape. If there isn't enough folic acid in the mother's body, there is a risk that the spinal column will not completely cover the spinal nerves with skin and bone. This creates what is known as a myelomeningocele, or a spina bifida. During our visit to an ultrasound specialist in Stevensville, we learned that the unborn baby, Logan Ryan Insley, had a small spina bifida. The lesion of exposed nerves, in a sac of skin, was located just above the coccix or tailbone, apparently running from the S2 vertebra down to S4/S5. This is one of the lowest, and, fortunately, mildest lesions a baby can have. The higher the lesion, the worse the potential problems the child could face in life. At first, we were devastated. Thoughts of wheelchairs, speech therapy, a child with a lifetime disability, unable to perform any of the functions of "normal" daily life, flashed through our heads. But we both prayed that things would work out and tried to remain as optomistic as we could. Plus, we had to find out more. Mandy poked around on the internet and learned more in one week than we either would have in a lifetime without having a need to know. Of all the things we learned, the one thing we learned that was most encouraging was that, while not yet curable, the exposed-nerve situation was operable and could lessen further problems exponentially. So we were learning the "what"- we needed to know the "how" and the "when" as well. We went as far as Baltimore and Philadelphia from our home on the Eastern Shore of Maryland to determine not only the exact location of the lesion, but when surgery to repair it could take place. In mid-April, we visited Children's Hospital of Philadelphia (henceforth referred to as CHOP), and it was determined that the lesion was one vertebra too low for surgery while Logan was still in the womb, inasmuch as a context in which the gains outweighed the risks. While surgery could conceivably be undertaken before he was born, the risks, we learned, outweighed the advantages- specifically, regarding a high mortality risk for the fetus. Only about 50 surgeries on such children had been undertaken, with lesions in varying locations, and three had been lost during the operation. One of the children who died had an S1 lesion. Thus, we felt the risks were too great considering his lesion was one of the "best" or least severe cases of a myelomeningocele. So, for the next three and a half months, we went to Johns Hopkins regularly and Mandy and the baby were monitored by the ultrasound people at the Fetal Assessment Center (FAC). Mandy also had issues with gestational diabetes, so she had to be extra careful while pregnant. After continued monitoring, and considering that when Spencer was born, after a grueling 21-hour labor for Mandy, he was born by Caesarean section, it was decided to have Logan the same way. It was really a no-brainer, considering his condition and that Mandy would have had him that way even if he were perfectly healthy. The C-section was scheduled for Thursday, 1 August, 2002. But due to a combination of factors, those being a heat wave, my wife getting sick and starting to dehydrate two weeks before the surgery, and her amniotic fluid index dropping to near-critical levels, Logan came even earlier than we had all expected. On Tuesday, 23 July, 2002 at 1:45 p.m., I was at work and received a call on my cell phone from Mandy. She was at her mother's and told me that she was having contractions that were five minutes apart and that her mucus plug had begun to come out. I told her to go to the local OB's office and let them check her out- her mother had suggested the same thing, although Mandy herself figured it was nothing. "I think this is something, hon," I told her and said that she should listen to her mother. While she did that, I stopped by the local Wal-Mart near my place of work and got two duplicate house keys made. Something deep down told me that it was time for the baby to come. At that time, I realized also that I had not packed a single thing yet... I headed back to work, told my boss I had to leave, and explained the situation to her. Melissa, the lady in charge that day, said, "Yep, you're having a baby," and I was on my way home a moment later. Frantically, I flew through the house, grabbing clothing hither, thither and yon (you wouldn't believe how many white t-shirts I have!), throwing assorted toiletries into a backpack, and grabbing a camera, a book to read- I even took some dry groceries with me. About 2:45 p.m., the phone rang again. "It's time," Mandy told me. So, I was off to see her. I raced to Easton Memorial Hospital, and found her in the birthing center's triage unit. She was still having the contractions, and due to the nature of the pregnancy and the baby's condition, the delivery would take place at Johns Hopkins. Mandy was packed into an ambulance, and I unloaded my car's contents into hers, moved my car into the employee lot (she happens to work at that hospital), put her employee parking tag on my rearview mirror, and along with my uncle, who had driven over from Cambridge, went to Baltimore. Logan was born at 10:27 p.m. that night, weighed 7 lbs., 7.5 ounces, and was 20.5 inches in length. Considering his circumstances, and thinking of how useful a day-by-day journal of the goings-on in our lives might be to other parents with such a child, I decided to write a journal, and to post my entries on the family website I had just created for the baby. It is from this point that my journal entries begin. I make these entries in the journal in the hopes that any family or families who have children with spina bifida in the future can learn something, and perhaps be a bit more prepared for dealing with problems that might ensue with raising such a special-needs child. Forewarned, as they say, is forearmed, so let me close this prologue by saying this: if you are a woman who plans to have a baby soon, start taking your folic acid IMMEDIATELY. Take prenatal vitamins from the day you DECIDE to have a.baby. Don't wait until you find out you're pregnant- by then, it is already too late, as the spine forms in the first three to four weeks of gestation- and most women don't know they're pregnant until four weeks at the earliest. |
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