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Looking for answers; searching for a cure; valuing a life

Looking for answers; searching for a cure; valuing a life
Looking for answers; searching for a cure; valuing a life | Hudson Hayes

Hudson Hayes has a smile as wide as his beautiful little toddler face and “the will and the want to” to accomplish amazing things.
He has parents — Scottie and Michelle (Barnett) Hayes of Union City — who love him beyond words.
He has siblings — 5-year-old Davis and 6-month-old Ella Jean — who play with him and around him and make him the center of their world.
He has grandparents — Jimmy and Theresa Barnett of Hornbeak, Darline and Kevin Knop of Martin and Walter Scott Hayes of Samburg — and great-grandparents —Tommy Upchurch of East Prairie, Mo., Pat Hayes of Union City and Willie Hornbeak of Pulaski, formerly of the Shawtown community — whose devotion knows no bounds.
He has nurses and doctors and therapists who are committed to helping him reach goals that seem impossible.
Hudson also has an illness — a baffling disease, a mystery disorder, an unidentifiable medical problem — that no one has an answer for.
It is not for lack of trying, however.
Each day a challenge
Michelle Hayes’ journal has so many entries detailing doctors’ visits and hospital admissions and waiting room sessions surrounded by families with their own overwhelming problems that it seems there surely must be some place Hudson has had to go every day of his very young life. The book is simply filled with page after page of notations related to miles traveled, names and faces learned, clinic schedules absorbed, hospital rooms adapted, symptoms explored, new hope born, strong faith assaulted and myriad questions unanswered.
Simply reviewing the book with Mrs. Hayes is an entirely exhausting experience. To think of living it day after day is overwhelming. The job is not one for the faint of heart. And no one can accuse his family of ever considering that timid approach.
The Hayes family plows ahead. They do what must be done: for Hudson and for each other and for others in need.
Hudson’s father is a soldier.
On Dec. 2, 2009, he left for Texas with the Tiptonville 1171st National Guard unit. When it was obvious the birth of his second child was imminent, the Red Cross stepped in and helped bring him home only a few days later. Hudson Hayes was born by C-section after an uneventful pregnancy. His first cries were rather weak, compared to those his parents remembered from his older brother, and his hands seemed rather floppy, but his doctor was hopeful this was simply a result of his position in his mother’s womb prior to birth.
The family went home two days after his birth. They celebrated the holidays. Scottie Hayes returned to his unit Jan. 1.
On Jan. 5, at Hudson’s two-week check-up, Dr. John Hale discovered a heart murmur that had not been evident before. He was also concerned that the little boy’s cry was still weak. He referred the baby to Le Bonheur and was concerned enough to have Hudson admitted through the emergency room.
Prodding, poking, pricking, sticking and many other distressing procedures followed.
“I remember being there and sobbing over my baby while the doctors did all this checking. There was another mother near us and I was just such a basket case. She told me that her baby had some kind of syndrome and would die within a year and she sounded so calm. I couldn’t imagine how she did it,” Michelle Hayes recalls of the first hospital experience. “I realized later on that you go through so much. It’s not that she was a bad mother. I learned not to pre-judge people, because, later on, I was the one who seemed fine in some hospital while another frantic mother was crying because her daughter had collapsed with a seizure. In the first situation, I had been judging that calm mother and asking my own mom how she could behave that way. The next time, I wondered if the new mom was having the same thoughts about me. That mother was just in her first visit,” Mrs. Hayes says, and the memory of so many other hospital visits in her family’s own experience flits across her face.
Specialists in virtually every medical subset examined little Hudson Hayes. His mother was warned to prepare herself for something very serious. Each day there brought new highs and lows as possible explanations for Hudson’s condition were considered, tested for and abandoned.
“My mom and I were literally on our knees begging God. It was horrible. I was calling my husband and trying to tell him what was going on and yet not knowing myself. At one point, Hudson’s thyroid levels were all over the place. Then they discovered his hips were dislocated and when they did an ‘echo’ of his heart, they found he had a partially bicuspid aortic valve. Now Hudson is such a blessing to us, but what you go through at the time … My husband told me he prayed for God to give him whatever was wrong and make our baby OK. He was crying over the phone and we had no idea what he should try to do.”
There was no shortage of questions, both about what was wrong with the Hayes’ son and what they should do about it.
Should little Hudson’s father ask the government to let him come home? How would their decision affect the family’s insurance coverage? Where was Scottie Hayes — his family’s only source of income — the most important to his wife’s and sons’ futures?
Michelle Hayes and her mother, Theresa (whom Michelle describes as her right arm through the past two years), finally left Le Bonheur with little Hudson, hoping that his problems were thyroid-related and could be treated successfully with medication. They were told to return in two months for further evaluation.
In the meantime, only a few days later, the trio ended up in a Germantown orthopedist’s office. He evaluated the infant and recommended a pelvic harness brace to keep his tiny hips from slipping out of joint.
Over the next two weeks, there were repeated visits and more and more tests in Union City, at Le Bonheur and with the orthopedist. Some thyroid studies appeared normal. Others were wildly out of whack. Medication was begun. Also, it was determined that the brace was ineffective in keeping Hudson’s hips in place.
Somehow, in that medical schedule, the family found time to keep a referral visit to Tennessee Early Intervention, where they met Rene Bard. She began occupational therapy and physical therapy with the infant and saw him on a weekly basis for months, until she was assigned a different job; however, according to Mrs. Hayes: “She loves my son and even though she’s in a different position now and doesn’t see kids, she still comes to see Hudson. She was here just last week to check on him.”
Through Ms. Bard, Hudson gained access to a skilled physical therapist who “wrote the book,” says his mother.
By late February, the Le Bonheur neurologist caring for Hudson was still unhappy with her little patient’s progress and she ordered still more tests. The first lumbar puncture to draw spinal fluid took place March 4 and the physician felt real answers resulted. She advised Mrs. Hayes to stop breastfeeding and started the infant on a special ketogenic diet. This is a high fat diet, loaded with protein and devoid of carbohydrates. Hudson’s mother even had to be cautious about the kind of soap she used to bathe him. The diagnosis was glucose 1 transporter deficiency.
A month later, the physicians retracted that diagnosis and told Michelle Hayes they were seeing changes in subsequent EEG’s.
A gastrointestinal doctor entered the picture at that point because of a choking episode Hudson endured while taking his bottle. Meanwhile, the orthopedist was still struggling to find a solution to the baby’s problems with hip displacement.
Between doctors’ visits, Hudson was deep into therapy sessions at the Kiwanis Center in Jackson.
Still more genetic testing followed. The chromosome test was negative. A “bad” EEG resulted in dosages of folic acid and seizure medication, although the baby had never had a seizure. He was also placed on a mitochondrial medication and was taken off the special glucose diet, when it was decided that had not been part of the problem.
From the genetic specialist who had seen Hudson there was no word, and trying to make contact to find out what was going on became a nightmare, so, with Dr. Hale’s help, Mrs. Hayes got in touch with Vanderbilt and began a new series of tests there. A swallowing test was one of the first.
A physician in the Nashville arena confessed he was mystified but suggested two possibilities. The most frightening of these was a deadly syndrome known as spinal muscular atrophy. Six weeks of nightmarish waiting was involved before it became clear this was not Hudson’s problem.
During April, Mrs. Hayes and her mother bounced back and forth from Memphis to Nashville, with swift trips back to Union City, while myriad new tests were tried and old test were repeated. Every new possibility as an explanation for his condition and a prerequisite for effective treatment proved to be an error.
In May, a physician at Mayo Clinic in Rochester got involved. He had been made aware of the puzzling case when one of the Le Bonheur physicians contacted him by e-mail and sought his advice. Mrs. Hayes, whose husband had left the country for service in Kuwait a month after Hudson was born, headed for Minnesota with her son and her mother, determined that the physician would examine her baby personally.
At five months old, Hudson could not hold his head up and he seemed to move in slow motion, matching the pace of his delayed development.
During the week in Minnesota, numerous specialists took a stab at diagnosing the child with the mystery illness. Some thought it was a neurological problem. Others suspected a connective tissue disorder. The only “positive” was actually a negative of sorts — the medical team ruled out a mitochondrial disorder.
Back in Tennessee, the family unit returned to Vanderbilt in mid-June and learned that doctors there were ruling out muscular issues as the culprit.
Because he could not lift his head, it was becoming misshapen, so the baby was fitted with a special helmet. The mid-summer Tennessee heat made the headgear a torture device and, after two weeks, they decided to abandon it.
June and July were filled with more of the same, between doctor visits and therapy.
“My mom went everywhere with me. The best person a daughter can have is her mom. She cried with me and she was always there and always ready to go. Hudson adores my mom because she was always there,” Michelle Hayes says.
In August, Hudson switched therapy sites to Cane Creek in Martin. On August 9, an orthopedist recommended putting the baby in a cast from the waist down that would keep his legs spread-eagled and would, hopefully, keep his hips in place. It was necessary to “put him under” to apply the cast.
In July 2010, there had been a bright note. Scottie Hayes got R&R and came home to visit his family. It was the first time he had seen his youngest son — the baby he and his wife had tried to conceive for a year — since just after his birth.
A month later, after he returned to his unit, Hayes received a phone call from his wife. She was pregnant.
On Aug. 23, Michelle Hayes lost their baby and had to have a D&C in the midst of being a mother to her oldest son and trying to find a cure for her youngest son.
New doctors continued to enter the picture, but still no one had an answer.
September saw Hudson subjected to another surgery for a cast change, plus a swallowing study, since his food intake was severely limited by his seeming reluctance or inability to swallow. That month also marked the beginning of speech therapy. Unhappily, Hudson also began to experience repeated ear infection — three of them would complicate the picture in October alone.
In October, too, Hudson took his last dose of seizure medication. The good news has been that he has never had a seizure.
Through it all, there was constant contact with insurance companies and medical business offices.
“The life of a sick child’s family is not just centered on sitting and holding a sick child and wondering what is wrong,” Mrs. Hayes says. “It is a constant contact with all kinds of people and constant note taking and double checking and going along behind everything that is done.”
Meanwhile, all reports coming back from Mayo Clinic were negative. The only “problem” they could identify sufficiently to treat was his need for glasses. They also put him in a brace that resembled a swimsuit to provide him some support, since he appeared to be trying to sit up. The hot-natured little one hated the brace and was constantly pulling off his new glasses.
Somewhere along the line, the possibility of an answer to the unknowable from the National Institute of Health surfaced.
When Mrs. Hayes checked out the organization online, she discovered they had an “undiagnosed disorder program.” The facility offered the only place in the world where every gene in the body could be studied and forced to yield its secrets. When she contacted the NIH, she was told they accepted 50 patients a year and they would need all his records, to that point, to make a decision about his suitability for the program. That meant multiple conversations with Vanderbilt, Le Bonheur and Mayo’s to make sure everything was provided.
In December, as Hudson was turning a year old, his father was able to come part way home — to Mississippi — to undergo debriefing. Mrs. Hayes drove there to meet him so the couple could have a few hours alone before they had to pick up the pieces of the regular routine that kept her running from one location to another for Hudson’s sake.
While his parents were relishing some stolen, almost-normal hours in Mississippi, Hudson underwent some traumatic event. He had screamed with what seemed to be pain in his leg, according to his grandmother, but no injury showed up. Because her own mother was sick and needed her, Mrs. Barnett was not able to accompany her daughter and grandson on their hurried trip back to Mayo Clinic. However, Hudson’s grandafather, Jimmy Barnett, was able to accompany them.
There it was discovered that his tibia and fibula were fractured as a result of his osteopenic bones.
Despite his injury, Hudson began rolling around on his own the day before Christmas and the neurologist who had been treating him bowed out of the picture, saying it was clear to him the problem was not neurological. One more possibility was discarded, but the family seemed no closer to finding an answer and a treatment and cure.
Cognitively, the small patient appeared to be doing well, but it was evident his joints were popping in and out, although this did not appear to be a source of pain for him, and everything was “spongy.”
Scottie Hayes, who had last seen his son as a seemingly normal newborn with the needs of most babies, came back to the heart of his family at that point and had an immediate and eye-opening immersion in the 24-hour, 7-day-a-week on-call nature of parenting that made caring for a healthy child seem to be a true leisure-time activity.
With Christmas just passed, the newly-reunited Hayes family opted for a few hours of normalcy and traveled to Paducah, Ky., to return an item to a store there. In celebration of the holidays and being together again, they treated their 4-year-old to some time in a jump house setting. The result was a broken arm.
Mrs. Hayes, who is an R.N., watched medical personnel wrap her older son’s body mummy-style, binding his arm to his body, and dose him with codeine to help ease his pain while the family raced off to Vanderbilt just before midnight. The elbow fracture turned out to be completely common and easily treated, but the family was now dealing with two little boys in casts.
A few days later, they were back at Vanderbilt with a very sick Hudson. This time, he was suffering from a bronchial condition. During treatment, the family learned more about the problems related to his heart and lungs.
The baby was dealing with a bicuspid aortic valve and mild dilation of the aortic root. If the dilation became too severe, the aortic root could burst. It was determined that he also had a small atrial septal defect. In simple terms, there is hole between the right and left atrium in his heart that allows blood to leak back and forth between the chambers. Plus, he has a right bundle branch block, resulting in slow conduction.
To top off everything else, big brother Davis was diagnosed with a fatty ingunial hernia and had to have corrective surgery.
To maintain her nursing license, Michelle Hayes went back to work part time and tried to keep up with all the demands she had been juggling for her son’s first year of life.
Complications in the little boy’s second year kicked off with the need to have tubes put in his ears in February, but that month also brought some good news.
The NIH alerted the Hayes that they would accept Hudson into their program come September.
“I cried and cried,” Mrs. Hayes recalls. “You’re just trusting that someone will help you.”
But there were still more challenges ahead.
Hudson’s therapist alerted his parents to concerns she had about his back as he struggled to sit up. Doctors diagnosed scoliosis and he was fitted for a brace, but it was so tight, he literally could not breathe. The toddler-aged child was trying to crawl but could only manage sort of a military-style locomotion and sitting was still a problem. Vanderbilt orthopedists removed the brace and elected to simply watch the child’s progress.
And the Hayes discovered they were expecting another child. The pregnancy was termed high-risk and Michelle began seeing a specialist to help her deliver a healthy baby.
During this time, Hudson’s therapy location changed yet again, and the family was forced to drive to Dyersburg to secure the needed services.
Last July, a new gastrointestinal doctor insisted Hudson must begin treatment at a feeding clinic. In August Hudson’s leg broke again and he had to have another cast. Later that month, he also received a feeding tube because he was so low on the growth chart. Then, he was camped out in the hospital for four days when he became ill after the feeding tube placement was carried out.
Mrs. Hayes, Hudson and Mrs. Barnett were scheduled to travel to Bethesda Sept. 25, 2011, but on Sept. 22, Hudson was sick enough to be admitted to the local hospital, where his doctor pumped him full of fluids and antibiotics and got him in shape to catch a flight out of Memphis for Maryland on schedule.
During their week-long stay, Hudson was subjected to innumerable tests of all kinds. The specialists discovered he had severely enlarged adenoids and tonsils that were blocking his airways. On the positive side, they eliminated an early suspected foliate deficiency once and for all as the cause of any of his problems.
They insisted the issue had to be a connective tissue disorder and decided the scoliosis could no longer go untreated.
The family was referred to the nation’s top connective tissue doctor and a first-rate orthopedist in Cincinnati while specialists continued gene studies on all family members.
They warned the family it could literally be years before they find what is wrong with Hudson. They also said they suspect he may have a totally new disease in medical annals.
“We’ve been looking, all this time, for a black and white answer for Hudson, but sometimes there aren’t any. Just because doctors can tell you a negative — something it isn’t — doesn’t mean it’s over. The first orthopedist we saw told us he wished there were no diagnoses because providing one to parents affects their expectations,” Mrs. Hayes recalls.
Just before Hudson’s second birthday, his baby sister, Ella Jean, made her appearance in the world on Nov. 29, 2011.
To date, she seems a healthy and happy baby, showing no signs of any of the problems that affect her brother.
A visit back to Cincinnati in early February resulted in a dexi-scan to determine Hudson’s bone density. A “reading” of -2.5 results in a diagnosis of osteoporosis. Hudson’s reading was -8.5. His bones are so fragile they resemble rotten wood.
Treatment with a drug used to treat brittle bone disease was begun and the family is praying it will be effective.
His scoliosis is so severe that if back surgery becomes a necessity, there will be nothing to place the rods in.
It is to deal with this issue that he is on a schedule of monthly infusions. Doctors also decided to put Hudson back in a cast that covers his complete torso to try to control the scoliosis long enough for the medication to have time to be effective.
Meanwhile, everyone involved had been holding their breath for word of a diagnosis from NIH. That word has yet to come.
That delay has not slowed down efforts by Hudson’s new physicians, however.
In early April the toddler, his newborn sister, his grandmother and his mother camped out in the hospital for a GI series.
While they were there, they did receive happy news from doctors that the cast was working. His physician expressed glad surprise at the progress and said that if the treatment were not effective, the only other option would be to fuse the child’s back, which would keep him at his present size all his life.
Right now, Hudson’s chances of avoiding that fate looking better and better, however.
The decision to try a permanent surgical approach to keeping the child’s hips in place has been put on hold until he is 4 years old, although the earlier such a procedure can be carried out, the better it is for a good outcome. But Hudson’s body is simply not ready to handle that approach, so the monthly infusions and every-other-month castings continue in Cincinnati.
“A disabled child is actually a blessing for a family, but what they go through is the hard part,” Hudson’s mother says. “You don’t want people to feel sorry for you. I’ve gone through nothing, but you hate what your child has to go through — all the pricks and sticks. Hudson has changed my life. He’s brought us all closer to each other and to God. I know my purpose is to glorify God. Hudson’s condition has brought us to our knees. You’ll do anything …” she says quietly.
Mrs. Hayes has warm words for the spiritual support provided by Troy First Baptist Church, where prayer is ongoing for her child and where a spaghetti supper fund raiser and auction are planned for June 23.
Recently, just before a trip to Cincinnati, Hudson was brought to the front of the church where the deacons laid hands on him and prayed.
She can’t say enough about those who help her care for her son, such as Ms. Bard; nurse Cindy Burk; physical therapist Amy Staggs; occupational therapist Shelly Seratt; and speech therapist Cherie Hickman, all with Sports Plus and Rehab in Dyersburg.
She praises Dr. Hale for speeding them on their way with no questions asked when the possibility of an answer arises and for dealing with their myriad health problems here at home. “A snotty nose for someone else can put Hudson in the hospital for four days,” she notes with a smile.
“And then there’s my mama,” she repeats. “There are no words to say what she has meant. I don’t know how I could have done it without her. She goes on every trip and when we get home, she helps unload and she just keeps going. My husband’s family and my dad have been so supportive, too. And friends of the family have helped us financially.”
It is to care for his family financially that Scottie Hayes will be leaving for yet another tour of duty Aug. 8. This time, his destination will most likely be Saudi Arabia.
“He does what he has to do, and that’s a lot,” his grateful wife says. “He’s sacrificed a lot so I can be ‘on my adventure,’” she says with a laugh.
Meanwhile, the family waits some hopeful word from NIH, even though they have been told it can take a year to observe even small changes.
A less than positive change occurred just a few weeks ago. In another stab at normalcy, the family went to Reelfoot Lake for a meal and Hudson showed himself willing to try to eat shrimp. For a child with virtually no appetite, any willingness to eat is cause for celebration. Not this time, however.
Within minutes of consuming the seafood, the little boy started breaking out and having respiratory issues. His family rushed him to the emergency room, where he was treated with steroids for the anaphylactic reaction which could have killed the little one. Now his mom has added an epi-pen to her arsenal of supplies.
Despite the mountains he must scale, Hudson’s will has him slowly navigating the family coffee table on the wobbliest of legs these days. He will soon receive a special walker and a special stroller that may help make him more ambulatory in the future.
And every day moves the family closer to the time when the phone may ring with word of a diagnosis, a treatment, a cure from NIH.
Hope thrives at the Hayes’ home.
“Hudson has changed me,” his mother says. “He’s changed my husband. He’s changed our prayers. At some point, you realize you’re no longer praying, ‘Lord, let my child be OK.’ You’re simply praying, ‘Lord, let my child live.’”
Let this child live.
———
Special Features Editor Glenda Caudle may be contacted by email at glendacaudle@ucmessenger.com.

 

Hudson’s Hope Fund

The mission of Hudson’s Hope is to provide for travel and medical expenses related to the treatment of Hudson Hayes, son of Scottie and Michelle (Barnett) Hayes of Union City, and his undiagnosed medical conditions and to provide support to other families in similar situations. Hudson’s Hope is a fund of the West Tennessee Healthcare Foundation. Founded in 1985, the West Tennessee Healthcare Foundation has grown to become one of the largest community foundations in West Tennessee with more than 300 funds and $20 million in assets.
To make a gift to Hudson’s Hope:
• Online: www.wthfoundation.org/makeadonation (Please be sure to add Hudson’s Hope under the designation box to ensure proper credit of the gift)
• Mail: Hudson’s Hope, in care of the West Tennessee Healthcare Foundation, 620 Skyline Drive, Jackson, TN 38301.
• Phone: Call (731) 984-2142 to make a credit card gift over the phone. Please have the card security code (three-digit code on the back of the card) available when you call.
For additional information about Hudson’s Hope or the Foundation contact Chris Ramey at Chris.Ramey@wth.org or call (731) 984-2142.

 

Union City youngster battles unknown with family, friends

By GLENDA CAUDLE
Special Features Editor
Something is wrong with your baby. Terribly wrong.
And no one can tell you what it is; no one can offer a cure; no one can promise the future.
How does your family make it through another day?
This is the story of the way one family is coping. It begins with a “letter” written by 2-year-old Hudson Hayes’ mother, Michelle, from her son’s perspective.
Hudson’s Story
Hi, my name is Hudson Hayes.  
I was born at Union City’s Baptist Memorial Hospital Dec. 21, 2009.  
I have had multiple tests. These include MRI’s, EEG’s, echocardiograms, blood tests and skin and muscle biopsies. I have seen many doctors at Le Bonheur Children’s Medical Center in Memphis, Vanderbilt Medical Center in Nashville and Mayo Clinic in Rochester, Minn., to find a diagnosis.  
I have also been accepted at the National Institute of Health in Bethesda, Md., to find a diagnosis. They have run more tests at the National Institute of Health but have not yet come up with a diagnosis. They do believe I have some form of a connective tissue disorder.  
The National Institute of Health has recently sent my family and me to Cincinnati Children’s Hospital to receive Pamidronate infusions every month to strengthen my bones for future back surgery. On April 4, we traveled to Cincinnati Children’s Hospital, where I was fitted for a back cast to straighten and maintain the current curvature.   
The curvature was at 70 percent but now it is 20 to 30 percent, after cast placement. I will be going to Cincinnati Children’s Hospital every month for the infusions, and every other month I will be put to sleep for cast changing. If, at any time, the back cast stops working, I will have to have open back surgery and growing rods placed in my back.  
We hope the cast continues to work so I can have more time to take the medicine (Pamidronate infusions) to make my bones stronger.  
Some of the challenges I have are farsightedness, heart defects, feeding concerns that reqvuire a feeding tube, scoliosis and kyphosis (curvature of spine), low tone (floppy), osteopenia bones (brittle bones — which has resulted in three fractures), hypermobility of joints (all joints pop in and out) and hip dysplasia (dislocated hips).  
I am crawling and standing with assistance, but I want to walk and play with my big brother, Davis.  
It is going to be a long road ahead, but with God beside me, I can do anything and I will walk one day.
Friends of the family are planning a spaghetti supper fund raiser to assist Hudson’s family with medical expenses June 23 at Troy First Baptist Church. The meal will begin at 5 p.m, with an auction planned for 5:30. Plates will sell for $5, with tickets available at the door.

 

Published in The Messenger 6.13.12

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