excerpted from The Lyme Quilt, from the square dedicated to his younger, surviving sibling, Gabriel.
Gabriel's Story
I was sickly for most of my life. In my teens, I began to have grand mal seizures, and no one knew why. Diagnosed with Lupus, MS, etc.. my parents took me from one specialist to the next. I had always had arthritis, headaches, etc.. Finally, a shrink was called in, who promptly suggested that they fire all of the other doctors. He said psychologically, I was OK, but was depressed because I was always ill. I had frequent pneumonias, causing bouts in the hospital, after which I would improve for a time.
I also was plagued with really bizarre ailments such as a ruptured ovarian cyst at age 10, and infected gallbladder at age 20, and a Meckle's diverticulum. By the time I got to a Lyme Literate Doctor, I was 35, having up to five seizures per day, couldn't chew (jaw locked up), was unable to hold my head up, and was drooling. I was previously told that because of repeated pelvic surgery for endometriosis, I would not be able to get pregnant. As luck would have it, three months into my LD treatment, I discovered I was pregnant.
I promptly enrolled in the LDF Pregnancy Study. All of my bloodwork came back negative. My Lyme doc said it was because it was all of the steroids that I was on before. This pregnancy was a problem. Lots of spotting and bleeding. It was followed very closely by a team of specialists. One Friday I went to the OB/GYN with a fever, spotting, and general malaise. She said, "Well, with all of the viruses that you have floating around your body, no wonder you don't feel good!" I requested an internal exam.
"None needed," she said. By Monday, I felt really bad and called the office again, this time requesting a different doctor. He felt we should get a sonogram, just to be on the safe side. The sonogram showed that the cervix was gone, and that the baby was in the birth canal. I was rushed to labor and delivery and put in a little room away from all of the other mothers who would have their babies. Randy Lee Stevens Jr., born four hours later at 20 weeks, six days.
They asked us if we wanted them to take "heroic measures" to save him. We said no, we just wanted to hold him until he passes. He lived in our arms for six minutes, but he'll live in our hearts forever.
I was one giant infection and was hemorrhaging. They rushed me to the OR. After that, I had no fallopian tubes, right ovary, and only one-third of a left ovary. The surgeon said I had some of the worst scarring she had ever seen. I was put on IV's for awhile, then switched to Bicillin, LA injections, into my thigh once a week. OUCH!
In December 1997, I began what I thought was the flu, but it wouldn't go away. All of my symptoms seemed to worsen. It finally dawned on me that I might be pregnant. I called my OB/GYN's again. "NO WAY," they said. They claimed it was physically impossible. So, I bought a home pregnancy kit to prove it to them. Then they started moving, I was rushed in, then rushed to the perinatologist. By the time I got home, there were three different messages on the machine from the doc's.
My bloodwork was a mess, high EBV titers, high anti-Kell antigen titers. Kell kills fetuses by destroying the red blood cells of the baby. This causes the baby to hydrops (swell) and die. They arranged for blood transfusions for the baby before he was born, and dialysis for me until he was big enough to have the transfusions. Amniotic fluid was sent to the Mayo Clinic (which I was told was as useful as sending it to my 8-year-old for analysis for Lyme -- I would never get a positive there).
The only positive test for Lyme I ever had was after we lost the baby -- his liver and my placenta both PCR'd and cultured positive, using the LDF protocols. Fortunately, he was Kell negative and transfusions weren't necessary. At 33 weeks, 6 days, I called my mom. I was feeling lousy again. I was also having occasional feelings of pressure down there. At 16 weeks, the OB put a cerclage in (sewed my cervix shut to prevent premature dilation), so I wasn't too concerned about losing this baby in the same way I did Little Randy. Mom was adamant, PHONE THE DOCTOR!!! He advised me to come in, just to get checked on the machine.
I agreed. After getting hooked up, the OB nurse said, "Do you know you are having contractions every two minutes?" No. Then they had a resident come in to check me. By that time, I was 7.5 cm dilated, cerclage ripped out, no pain at all. They knocked me out after they discovered my heartbeat was irregular. Gabriel Lee Stevens was born on June 6, 1998, at 2:04am, and weighed 5lbs, 9 ozs. He had pneumonia in both lungs, hyperbulireubena, bradycardia, and apnea. He was rushed to the Neonatal Intensive Care Unit.
There, he was put on a ventilator to help him breathe. We were told his lungs would "clear up" after 48 hours, but they only got worse. He was started on IV antibiotics right then for ten days. We requested a Lyme test...not necessary. We requested a five channel pneumogram (a test to measure GERD)...not necessary. After eighteen days, we were told if we could find a pediatrician, they would release him on an apnea/brady monitor. We finally found a group of pediatricians to take him, but it wasn't easy. One doctor told us he was too sick to be in his practice!!??
After about two weeks, it was obvious, there was something wrong with this kid. He screamed incessantly, grabbed at his eyes, and hit himself in the head. We got him to a LLD, who ran tests on him and began treatment. In the interim, a neonatal cardiologist did the five channel pneumogram, and discovered he wasn't growing because he had GERD so severely, by the time the food reached his system, it had no nutritive value. So, he had to have surgery to have a Gastrostomy tube put in.
That's a tube that goes directly from his stomach to outside, so we can feed him and burp him through it. The top of his stomach was tightened, as was the bottom to help the food stay in there longer. Our LLD came under attack from the state health department about this time. He needed a positive Lyme test from Gabe, or wouldn't be able to continue to treat him. Since babies don't form antibodies until they are six months old, we were in a bind.
Lucky for us, there is the Lyme Urine Antigen Test, which Gabe took. He scored very high on that, proving beyond a doubt that he is a little Lymie. So, there shouldn't be any trouble from the state, at least as far as Gabe's concerned. The pediatric group he sees still doesn't believe that I could have transferred Lyme to Gabe before birth. And although Gabe still is too little to get on the growth charts, he is growing. He is obviously in much less pain, although he still has bad days.
Recently, he pulled the G-Tube out and I couldn't find anyone who would replace it. A resident in a hospital 25 miles away got the honors. Of course, he still has his monitor, which occasionally beeps and buzzes, but that's our Gabe. I honestly believe, as I did when I named him, that God has a special purpose for this child. As Gabriel has already overcome so many odds that were stacked against him.
