Originally written on April 28, 2006To Our Friends and Family,
Recognizing that many of you have differing levels of awareness as to what the last few days have held for the Lewis family, allow me to bring you up to speed.
Teressa, who was 38 weeks pregnant, went into labor last Sunday (which was perfectly normal, as she was scheduled to be induced later that week). At 4:54am on Sunday, April 23rd, she gave birth to a beautiful 8lb 9oz baby boy named Timothy Wade Lewis. Moments after her delivery, I as a new father began to sense the medical staff acting subtly different. Fifteen minutes later, while I was with my son in the nursery, my suspicions were realized. I asked a nurse, "Is everything OK with my son?" The reply I heard still echoes in my head: "Well, I am a bit concerned . . ."
The doctors and nurses were concerned about the way Timothy was holding himself, as he appeared very rigid in all of his major joints (hips, knees, elbows, ankles, and wrists). I looked to my right and left and noticed the other babies in the nursery were sprawled out in their bassinets. I looked down at Timothy and noticed he was quite the opposite. His hands, arms, and legs were simply drawn inward. My heart sank.
Timothy was swaddled and taken back to be with his beautiful Momma (she is an amazing woman). As Teressa glowed holding Timothy, I stood pale and gripped by worry. Teressa looked up at me, stared into my eyes, and asked a loaded question, "Are you OK?" It was true that I needed medical attention during the birth because I almost passed out . . . but she knew this was something different. I told her what little I knew: "They are concerned . . ." We three huddled together in the dimly lit room. What? How? Why?
Hours later, our pediatrician came and told us that he did not know what was wrong with Timothy, but he felt as though Timothy had some type of "genetic muscular/skeletal abnormalities". He recommended that we transfer Timothy to Brenner's Children's Hospital at Wake Forest Medical Center in Winston-Salem, NC so as to expose Timothy to leading experts in the pediatric and genetic fields. After one final and precious hour with Timothy, Teressa and I handed him over to the transport team who took Timothy away. A very stabbing moment, especially for Teressa.
The next 24 hours would be filled with erratic emotions, ranging from fear to anger. Not the emotions we expected to feel on such a joyous day.
On Monday morning, Teressa was released from the hospital, and later that afternoon, we visited Timothy on the Neonatal Intensive Care Unit at Brenner's. What an amazing place . . . and what a humbling experience.
On Tuesday, after various consultations, exams, and tests . . . and after witnessing God providentially directing events by putting Timothy in the path of a geneticist who was able to immediately diagnose Timothy's rare condition, we were given a name. Timothy was diagnosed with what is called Beal's Syndrome. We were told that since Teressa and I are not carriers of this genetic syndrome, Timothy had a .0002% chance of being born with Beal's. You can't get much closer to zero percent than that! As the doctor's said, this is an "anomaly" which for whatever reason, decided to appear in Timothy.
Beal's Syndrome is a congenital syndrome which causes contractures (tightening) in the joints as well as bowing of the long bones (lower and upper legs). People with Beal's are typically taller than average (the doctor's feel that Timothy will be somewhere in the neighborhood of 6' 5"), their arms and digits are disproportionally longer, and they have what is referred to as "crumpling of the ear" (which just means they have a bit more cartilage in the top portion of their ear). Beal's patients, from what we understand, have differing levels of mobility based upon the severity of their contractures. We are encouraged that ongoing physical therapy does offer some improvement of contractures over time.
We have been told that Timothy is perfectly normal internally, as his heart, brain and other vital organs are fully functioning, and he is expected at this point to have a normal life span and intelligence. We also have first-hand proof that Timothy's kidneys are working as he pee'd all over Teressa today! The medical staff have commented numerous times about the fact that Timothy is exceedingly alert and strong, more so than most newborns. In addition, he has a very docile, sweet personality . . . and we think he is cute as can be.
Tomorrow, orthopedic specialists will be looking at Timothy to determine his specific prognosis. One area of immediate concern for us is Timothy's spine, as doctors will be exploring his lumbar region to determine if there are curvatures. As we have learned, this syndrome can cause ranging severities of scoliosis which could greatly affect Timothy's mobility and overall health. As Timothy is brought to mind, we would appreciate your prayers for our son and his medical team as they evaluate this critical and immediate concern.
Many times throughout each day, we find ourselves vacillating between walking by faith and walking by sight, as their exists a very real battle in our mind. We have come face to face with our frailty as human being . . . and our identity as His children in Christ. Despite the numerous unanswered questions, despite the overwhelming emotional struggles, and despite the uncertainty of what tomorrow will bring . . . we (by His grace) affirm that Timothy is fearfully and wonderfully made and we as a family will not be forsaken by our Father in Heaven. I cannot wait to share more with many of you how we most assuredly have seen God's hand at work in preparing us for this moment and sustaining and encouraging us in the midst of our struggles. We are His. May Jesus receive the glory He is MOST CERTAINLY due.
Teressa and I came across a great verse in the Bible a few months ago, and we rediscovered it with new eyes on Monday. This verse has become God's living Word to us . . .
Recognizing that many of you have differing levels of awareness as to what the last few days have held for the Lewis family, allow me to bring you up to speed.
Teressa, who was 38 weeks pregnant, went into labor last Sunday (which was perfectly normal, as she was scheduled to be induced later that week). At 4:54am on Sunday, April 23rd, she gave birth to a beautiful 8lb 9oz baby boy named Timothy Wade Lewis. Moments after her delivery, I as a new father began to sense the medical staff acting subtly different. Fifteen minutes later, while I was with my son in the nursery, my suspicions were realized. I asked a nurse, "Is everything OK with my son?" The reply I heard still echoes in my head: "Well, I am a bit concerned . . ."
The doctors and nurses were concerned about the way Timothy was holding himself, as he appeared very rigid in all of his major joints (hips, knees, elbows, ankles, and wrists). I looked to my right and left and noticed the other babies in the nursery were sprawled out in their bassinets. I looked down at Timothy and noticed he was quite the opposite. His hands, arms, and legs were simply drawn inward. My heart sank.
Timothy was swaddled and taken back to be with his beautiful Momma (she is an amazing woman). As Teressa glowed holding Timothy, I stood pale and gripped by worry. Teressa looked up at me, stared into my eyes, and asked a loaded question, "Are you OK?" It was true that I needed medical attention during the birth because I almost passed out . . . but she knew this was something different. I told her what little I knew: "They are concerned . . ." We three huddled together in the dimly lit room. What? How? Why?
Hours later, our pediatrician came and told us that he did not know what was wrong with Timothy, but he felt as though Timothy had some type of "genetic muscular/skeletal abnormalities". He recommended that we transfer Timothy to Brenner's Children's Hospital at Wake Forest Medical Center in Winston-Salem, NC so as to expose Timothy to leading experts in the pediatric and genetic fields. After one final and precious hour with Timothy, Teressa and I handed him over to the transport team who took Timothy away. A very stabbing moment, especially for Teressa.
The next 24 hours would be filled with erratic emotions, ranging from fear to anger. Not the emotions we expected to feel on such a joyous day.
On Monday morning, Teressa was released from the hospital, and later that afternoon, we visited Timothy on the Neonatal Intensive Care Unit at Brenner's. What an amazing place . . . and what a humbling experience.
On Tuesday, after various consultations, exams, and tests . . . and after witnessing God providentially directing events by putting Timothy in the path of a geneticist who was able to immediately diagnose Timothy's rare condition, we were given a name. Timothy was diagnosed with what is called Beal's Syndrome. We were told that since Teressa and I are not carriers of this genetic syndrome, Timothy had a .0002% chance of being born with Beal's. You can't get much closer to zero percent than that! As the doctor's said, this is an "anomaly" which for whatever reason, decided to appear in Timothy.
Beal's Syndrome is a congenital syndrome which causes contractures (tightening) in the joints as well as bowing of the long bones (lower and upper legs). People with Beal's are typically taller than average (the doctor's feel that Timothy will be somewhere in the neighborhood of 6' 5"), their arms and digits are disproportionally longer, and they have what is referred to as "crumpling of the ear" (which just means they have a bit more cartilage in the top portion of their ear). Beal's patients, from what we understand, have differing levels of mobility based upon the severity of their contractures. We are encouraged that ongoing physical therapy does offer some improvement of contractures over time.
We have been told that Timothy is perfectly normal internally, as his heart, brain and other vital organs are fully functioning, and he is expected at this point to have a normal life span and intelligence. We also have first-hand proof that Timothy's kidneys are working as he pee'd all over Teressa today! The medical staff have commented numerous times about the fact that Timothy is exceedingly alert and strong, more so than most newborns. In addition, he has a very docile, sweet personality . . . and we think he is cute as can be.
Tomorrow, orthopedic specialists will be looking at Timothy to determine his specific prognosis. One area of immediate concern for us is Timothy's spine, as doctors will be exploring his lumbar region to determine if there are curvatures. As we have learned, this syndrome can cause ranging severities of scoliosis which could greatly affect Timothy's mobility and overall health. As Timothy is brought to mind, we would appreciate your prayers for our son and his medical team as they evaluate this critical and immediate concern.
Many times throughout each day, we find ourselves vacillating between walking by faith and walking by sight, as their exists a very real battle in our mind. We have come face to face with our frailty as human being . . . and our identity as His children in Christ. Despite the numerous unanswered questions, despite the overwhelming emotional struggles, and despite the uncertainty of what tomorrow will bring . . . we (by His grace) affirm that Timothy is fearfully and wonderfully made and we as a family will not be forsaken by our Father in Heaven. I cannot wait to share more with many of you how we most assuredly have seen God's hand at work in preparing us for this moment and sustaining and encouraging us in the midst of our struggles. We are His. May Jesus receive the glory He is MOST CERTAINLY due.
Teressa and I came across a great verse in the Bible a few months ago, and we rediscovered it with new eyes on Monday. This verse has become God's living Word to us . . .
"For this reason I am sending to you Timothy, my son whom I love, who is faithful in the Lord. He will remind you of my way of life in Christ Jesus." 1 Corinthians 4:17
Words cannot begin to express the humble appreciation we have for the MANY of you who have prayed, called, written, and done so much for us in the way of offering your love to our family. Thank you for your understanding in us not being able to respond to you personally . . . but know your support has literally made the difference on numerous occasions throughout this unexpected journey.
Simply stated, we love you.
In Christ,
Chris (Teressa, Anna Ritchie . . . and our little man, Timothy)
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