Taylor James Passmore

Born: May 29, 1993 

Prosser, Washington (WA) - Full Trisomy 13
15 years old!

 

1-25-07
Taylor has been doing really awesome. He loves the middle school and they are doing really great with him. You can’t believe how good he is getting at pushing his wheel chair and steering in all directions. He even goes backwards and turns around purposefully now to steer in the direction he wants to go. For a long time, he would push his wheels but just keep going until he ran into something. He is feeding himself independently with a spoon, now, too! His aid at school is really patient and so good with him. We all had the flu the past 2 weeks, also, but get this—Taylor’s the only one who did NOT get it—knock on wood!!!!!!! Hugs,

Linda
mayorlusk@cityofprosser.com
luv2win13@embarqmail.com
 

1-10-06

We did not have a prenatal diagnosis of Trisomy 13—in fact, ultrasounds and blood work all appeared to be normal during my pregnancy. Taylor was born on his due date of May 29, 1993, weighing 5 lbs 11oz. Because his delivery was so fast, I thought his appearance (broad nose and closed eye) was due to the quick delivery. When I saw the ulcer (cutis aplasia) on his head, I seriously thought the nurse scrubbed his scalp too hard! Taylor had polydactyly (6 fingers and toes) all around. He has microphthalmia in one eye, which is blind, and a stigmatism in his “good” eye. Since Taylor was born on Memorial Day, his regular pediatrician was out of town. A neo-natal specialist was called in from Seattle to make the diagnosis. She said “we’re 99.9% sure your son has a very sad syndrome called Trisomy 13 and he won’t live past 1 month.” This news rocked me to the core. I could handle the fact that he had some birth defects, but death……..that was too much! One doctor told me, “You know, it wasn’t that long ago we used to put a baby like this in the back room and let it die. Do you even want to take him home?” The hospital counselor kept referring to him as having an “incompatible with life syndrome.” A karyotype was done and revealed that Taylor has full trisomy 13.

Taylor was in the hospital for a week, mostly due to jaundice. I was horrified to see the staff was keeping notes on us, (how we were bonding with our baby and how we acted around him).

Because we were told Taylor wouldn’t live, we had him baptized at a few days old. I couldn’t wait to get out of the hospital. I had a baby that I loved and adored, but it was very difficult to see every other couple come in and have a normal baby and people bringing them normal gifts! We got a lot of plants, which I understood, but nobody said congratulations or any of the things you want to hear. The first good thing anybody said to me was when my regular pediatrician, Dr. Brad, returned from vacation—he said “congratulations, and I’m sorry”. He also told me that Taylor’s organs looked very normal and healthy. He had a small pinhole VSD, which I’m sure, is why his ultrasounds looked good. Even so, I couldn’t believe there could have been something so terribly “wrong” and go unnoticed during pregnancy. When I returned to the OBGYN for my first post-natal check up, I asked my doctor if he’d ever had another trisomy 13 in his practice (a very large practice in Bellevue, WA). He said, “never a live birth”. At that time, I felt it was God’s plan for me not to have known, as I’m sure I would have had tons of pressure to terminate based on my doctors experiences. Not knowing in retrospect for me was a blessing, one of many to come.

I used a breast pump to give Taylor that advantage for the first 6 months. We added formula to the breast milk to boost the calories. Each week and month that Taylor survived was a celebration and a blessing.
He developed an ingranul hernia at about 4 months. We had surgery done at children’s hospital in Seattle. The night we brought him home from surgery, he stopped breathing. In a panic, I did full blown CPR and called 911. I thought that maybe the anesthesia had depressed his respitory system, but the bouts of apnea continued after that. Tests were done to check for seizures and other reasons for the apnea, but all were ruled out. Eventually, I got tired of calling the medics and learned to deal with the apnea on my own. Mostly because I grew tired of dealing with the medical community and their pressures for a “do not recesitate” order. Usually, with a few breaths, Taylor would come back around. We got an apnea monitor and oxygen (which we used following an apnea episode) at home. I did have my own internal struggles over this and wondered if I really was doing him a disservice, forcing him to live (as one nurse had suggested). I prayed about this and found peace in knowing when and if it were truly Taylor’s time to go, there would be nothing I could do to prevent this—truly it was in God’s hands and I was going to do everything I could for him, just as I would any other human being! Well, at 6 months we thought that time had come.

Taylor became listless and didn’t seem right. When I took him to the doctor, (this was the same doctor on call that said the cruel things to me at birth about letting him die) he said, I’m sorry, he’s gone into congestive heart failure, (and there were tears in his eyes!!) He really did care, after all! Taylor’s lungs were full of fluid and his oxygen saturation was in the low 30’s. The doctor put us in a private room at Evergreen Hospital in Kirkland, WA in a hospice type set up so that family could all come and say their good-byes. A priest came and gave Taylor his last rights, and we all loved and prayed over him. A chest x-ray revealed his heart was enlarged from rib cage to rib cage, taking up his entire chest. He was pulling for every breath, and after a few days, he did quit breathing. At that time, I knew intervention would be cruel, and we held him and prayed for God to take him quickly into heaven. The doctor came in, and after awhile, pronounced him dead. Then, a few minutes later as I held him, there was a gasp of breath, and the doctor said it was just a neurological response. About a minute later, another, 30 seconds, another, and he started breathing again! Of course, we were relieved, but this scenario happened several more times, and we just prayed for God to take our precious baby and let him be in peace. We’d been on an emotional rollercoaster all night. The next morning, a nurse came in, looked at him and said ,“this baby has been on the lap of Jesus. Jesus held you in his arms!” Taylor was much more alert and had a sparkle in his eye that let me know this was true. I told him, “I think God knows people need to see modern miracles today to believe”. He looked at me with a twinkle in his eye and a smile that let me know I was right. None of the doctors could explain Taylor’s recovery. They began giving him Lacex to rid fluid from his heart. They also said nothing but a heart transplant could save him, and they’d never seen a heart in his condition improve. Another x-ray was done to see why he was doing better, but his heart was still as enlarged as ever. Taylor was diagnosed with an idiopathic cardiomiopathy. After a month in the hospital, we decided it could be weeks or months, but he was in no hurry to go anywhere, so we took him home. Doctors gave him Digoxin for his heart, Lacex, and oxygen full time. We had an oximeter to monitor his oxygen saturation levels.
About 4 months later, I was able to turn Taylor’s oxygen way down and keep his saturation levels high. I began taking him completely off oxygen, and he still had saturation levels at 98 to 100. I called the doctor and we scheduled an echocardiogram. His heart doctor did the test himself. He kept looking at the screen, then looking at Taylor, and finally said “are you sure this is the same kid?” He left the room and came back with a group of doctors. They couldn’t believe what they were seeing. Taylor’s heart, they said, was as normal as any normal heart they’d ever seen. In fact, his VSD was even gone! You don’t often here doctors using the “M” word (miracle) but that day, we all knew there was no other explanation. We had echocardiograms every 6 months for the next few years until they told us we didn’t need to come back anymore.

From 11 months to age 7 were wonderful, very healthy years for us. At about 7 years, Taylor began having seizures. He takes Dilantin and Zonegran to control his seizures, and every once in awhile if he gets sick he will have a seizure that results in an apnea episode. At age 10, he had a cecal molratation (his intestines twisted) and had ¾ of his large intestine removed, along with a Lads procedure.

Taylor began scooting and crawling at about 2 and sat up independently at about 3 ½. He learned how to pull himself up and cruise counters and furniture between 5 and 6 yrs. He loves to walk holding onto hands, and can use a walker and rides an adaptive bike at school. He also has a wheelchair and can push himself independently. Taylor used to say baba (when he used a bottle) and still says mama. He is very expressive, shakes his head for no and uses switches to communicate at school-- making choices and to answer simple yes and no questions. If we mix up the switches, he finds the appropriate one. He drinks from a cup independently and assists with a spoon, eating by mouth (he is not tube fed). We blend his food so he doesn’t choke, and we also give him special supplements we have found to be extremely beneficial.

We recently had corrective surgery done on his feet because Taylor was not wanting to stand as much. His feet turned outward and worsened until he was basically standing on the insides of his ankles. The surgeon (Dr. Mosca at Children’s in Seattle) turned Taylor’s feet 70 degrees and gave him arches. He also lengthened the Achilles, behind the knees and at the hip muscles. After not standing correctly for years, he had developed some contractures and needed to have lengthening procedures done in order to stand up straight now. This is the first surgery we “chose” to do to preserve this quality of life for him.

Taylor is currently doing very well. He is so loved by all the kids at his school and our family and friends. He is really an inspiration to many, and we feel we get more from him than we could ever give him. I think he is actually very bright. He understands so much more than most people would ever want to give him credit for, but we just know. We can see how he can problem solve and respond appropriately to questions. He can play possum, too—when he doesn’t want to do something and is being lazy about cooperating, I will call him on it, and he laughs with a twinkle in his eye and then helps out doing whatever he’s supposed to do. He continues to learn and grow and is extremely loving and happy. We are always happy to talk with other families and are open to your questions. Thanks for reading our story and sharing with us.

We can be reached at
(509)786-4357 or email at mayorlusk@cityofprosser.com or luv2win13@embarqmail.com

1-10-06

Linda Lusk (Taylor’s mom), husband Kevin; brother Jordan (age 16); sister Karlie (age 10), and brother Riley (age 9).

Taylor Passmore, age 5, and mom