James Stewardson TPI Trust - American TPI Children
Sarh Jane Gladhill: Born May 21st 1998, Passed Away October 27th 1998
First Contact With Gladhill Family October 15th 1998 Update Sarah Jane Passes Away on October 27th 1998
First Contact we had with Sarah Jane's family on 30th September 1998 by e-mail
E-mail from Katie Gladhill:
"HELLO, MY NAME IS KATIE AND I WANTED TO CONTACT YOU CONCERNING THE TPI DEFICIENCY DISEASE. MY DAUGHTER IS SARAH JANE LOLLAR GLADHILL , BORN ON MAY 21, 1998 AND WAS DIAGNOSED ON THURSDAY SEPTEMBER 24, 1998 WITH THIS DISEASE.
She was born 6 weeks early at St. Vincent's Family Life Center in Indianapolis, Indiana and at 4 hours old her Bilirubin count was at 12, they told us this was a normal high count at 12 hours old and within 8 hours after her birth, Sarah had a blood exchange completed. She was never on a vent or anything else until a week later we were planning to come home and a sleep study & car seat study were completed on her at which time they determined Sarah might need oxygen (.25 liters-room air) and we came home on June 5, 1998 with an apnea monitor also. Sarah was born 5 lbs., dropped to 4.5 lbs. and built herself up on breastmilk to 5.1 the day we were discharged from the NICU. She continued to grow exceedingly 1/2 lb to 1-1.25 lbs a week. We monitored her Hematacrit & hemoglobin every other day for 3 weeks and then her level dropped to 6.7 so a 35cc booster blood transfusion was completed as an outpatient.
She continued to grow and make strides, at 2- 2 1/2 months, she was holding her head up somewhat, turniong from belly to back on the bed and following objects. At 3 1/2 months Sarah had completed antibiotics for an ear infection that had followed a bad cold and she just didn't seem herself. Her pediatrician admitted her to the hospital for at first pneumonia-but then discovered she had acute croup. Her croup was accompanied with severe stridor-they suspicioned traechea malasia was involved. She had two breathing treatments and continued in a mist tent crib for two more days and returned home.
Five days later, she was still not quite right, more floppy than had been noted prior to hospitalization and her C02 level in her blood had rocketed to 64. She was hospitalized again and extensive blood work had been done along with other metabolic testing.. She was hospitalized for 2 weeks(1 1/2 in PICU due to stridor being so loud, she was placed on oxygen upon admittance and remained there for 3 days-her O2 sats were excellant and she was removed off oxygen 3 days later.)
She continued to show signs of improvement and even her floppiness seemed better. We came home for one night to continue to await test results and returned to be re-evaluated by her pediatrician the next day-she pushed for us to be evaluated by Riley Childrens Hospital in Indianapolis-we had been working with several specialist associated with Riley, but due to insurance problems could not be admitted to Riley. Our peds doctor and pulmonary specialist pushed to get us admitted on September 14, 1998.
Sarah was intabated in the emergency room due to her stridor, her sats dropped and they said her heart rate had also dropped. The vent was to protect her airway from shutting off and Sarah continued to show signs of shutdown. She slowly quit moving her legs. Most of the initial testing EMG, ct scans, arterio scans, ultrasounds and preliminary metabolic testing etc...showed no significant signs of problems.
Her final enzyme results were to be received from Dr. Beutler, Director of the Scripps Research Institute Special Hematology Laboratory in La Jolla, CA. The enzyme results were devastating-the TPI range alone should have been between 805 & 1971--little Sarah had a score of 190.5. Most of the other enzymes were reportedly either extremely higher than normal or extremely lower. We are waiting a miracle-the outcome they told us would be Sarah could not survive due to her weak muscles without a vent --with no real hope of modern medicine, we opted to remove her and save any further suffering for Sarah and her two half brothers.
The vent was removed on Sat. Sept. 26, 1998 @ 2 p.m. and as a family we promised Sarah that we would not force her to eat or artificially keep her sustained in any way!
Sarah with God's love and family support is still hanging on to life-she is eating and voiding of her own schedule. We have oral versed for sedation and pain medicine if needed, but so far Sarah has been calling the shots. Miracle number 1 has come through and we hope for more, but feel that we are giving Sarah the best we can and she is home enjoying all the attention she can soak up! Any further info would be greatly appreciated! Sincerely Ken , Katie, Kenis, Justin and Sarah. Thank you for sharing your records with us!"
Update on October 15th 1998:
E-mail from Ken Gladhill:
"Sarah Jane was taken off the ventilator at Riley Children's Hospital in Indianapolis, IN , 19 days ago with a prognosis from the" Clinical doctors" that she would probably die within hours due to Respiratory failure. Thank GOD for small miracles !!!! She seems to be the youngest to have been diagnosed exhibiting neurological and respiratory problems. Most of the doctors that we have been associated with have been very clinical and don't seem to want to further any knowledge or hope, Sarah Jane in her own right has forced them to see that modern medicine is not the only thing in control of our outcomes! Her pediatrician, Dr. Linda D. Blanchard of Southside Pediatrics, Indpls. (317)787-1301, her pediatric pulmonary specialist, Dr. Michael Tsangaris, Indpls. (317)575-0875 and her pediatric hematologist/oncologist Dr. Arthur J. Provisor (317)879-9864 have been the ONLY ones that said they knew Sarah Jane was spirited and feel we need to find out as much as possible.
They put us in contact with a dietician-Clair McLaughlin whom is trying to find out about exact dosages for the cod liver oil -fish oils etc..., but to no avail most of the information she has been able to find out does not give specifics as to brands, actual ingredients or levels of the DHA or dosages. She noted that different brands actually do or do not produce the desired results due to ingredients and since we are dealing with an infant 4 1/2 months old that is totally on breastmilk with extra vitamins & 1mg of Folic Acid daily, it is a little bit more touchy. We are angious to try to follow the procedures you and several of the other TPI pioneers have listed, but we need some guidance and aren't sure where to go? One article forwarded to us mentioned an article by Dr. Martinez on DHA, but we can't find that one. Can you direct us or our doctors on who to contact regarding this-we don't want to over compensate due to the risks involved with the high levels of vitamin A & D, DHA & EPA that can cause extreme side effects in infants, example:bleeding.
Our pediatrician is verifying whether Sarah can have a Flu vaccine to wart off that virus and our entire family will also have one. Sarah is now 12 lbs. (5.5 kg) and 24 1/2 inches tall. She has maintained this weight for the last three weeks and at her 4 month checkup, she had grown 1 1/2 inches since her 3 mo. check. We feel this is a sign that maybe there is a chance to try and jump ahead, because Sarah hadn't developed extreme milestones and lost them due to her Hypotonia.
We gather that if we can keep her hemoglobin levels steady and not let them drop below 8 she might have a better fighting chance. When Sarah was released from Riley on 9/27/98 her hemoglobin was 10.6-as of Tues. 10-13-98 she is reticing at 20% hemoglobin level of 13, wbc-11.04, hemocrit-42--She is at this time appearing to stay ahead of her breakdown. Her tone is somewhat improved and seems to even possibly be cutting a tooth! Sarah does not seem to have too much trouble breathing at this time, however she has had two episodes where her color has been bad and a little problem with her airway has been noted. She also had to have her reflux medicine increased to 1.6 ml propulsid 4xdaily 15 min prior to eating.
She is breastfeeding 2-3 times a day and takes at least 4-5 2 oz fortified breastmilk bottles just so we know how her intake stands. There have been several days that she refuses the bottles and will only nurse 2-12 minutes at a time throughout the day, but Sarah is calling the shots right now. Her immunizations were up to date through 2 mos and at her 4 mo her pediatrician felt we should hold the vaccines due until 6 mos. incase of complications.
We want to know anything and everything we can besides loving, praying for guidance and God's will be done and encouraging Sarah to continue the great work to assist Sarah in being as strong as she can be while she is with us! Please forward any pertinent information you possibly can and let us know how or what we can do to help expedite this process. We thank God for believers and the TPI trust that has been great help in trying to understand this disease. We hope that Dr. Beutler will take our blood and analyse it as he has with Sarah's, we have yet to hear back on that, but Dr. Provisor is willing to do anything necessary to give Sarah a chance. She is as with all the other TPI children truly a gift from God and our little Angel!
One other possibility that has been briefly mentioned concerning the DHA, has been to alter my diet to include fish high in the DHA to safely pass it on to Sarah??? I started eating 3 1/2 oz of Pollock today and hope to hear more on the cod liver oil, etc.... as we feel time is of the essence with Sarah! We anxiously await any and all responses to us directly or to our doctors, please forward their inet addresses to the other doctors and specialists involved as they are not clinical not-activist yet warm activist doctors seeking knowledge to help Sarah and any other children they possibly can.
Thanks again to all and as Ken said in the previous note back to you, he hopes to have completed his own home page to add to yours on our Sarah Jane. In God we trust to guide the researchers and specialist to help us all no matter how great or small !!!
Thanks so much, Ken ,Katie, Kenis, Justin, Sarah Jane and Family!"
Tragic news of Sarah Jane passing away on October 27th 1998:
E-mail from Katie Gladhill:
"Dearest Dave, Doctors and all TPI families:
It is with our deepest regrets that we must inform you that our Precious angel-Sarah Jane joined the Lord on Tuesday morning at 7:40 a.m. while at home.
We were desperately awaiting an answer about more blood work from the TPI trust info line. Sarah became ill with a fever on Sunday 10-25-98 and late Sun eve she began to have erratic breathing-this continued through Monday and her pulmonary specialist thought she probably wouldn't make the trip back home from his office. We being the optimistic and God loving family that we are, opted to have her closest family and our minister meet at a local park. Sarah regrouped and her color seemed to get better in the sun and she even was able to enjoy a ride down the spiral slide, swinging, a merry-go-round ride and last, but not least a teeter-totter ride with her older brother. We then took her home for a family cookout and after giving her back to the Lord again ventured on through the night. Sarah woke many times and even ate and did her business throughout the night, we read, sang prayed and listened to her favorite instrumental music too. She opened her eyes wide and sighed her last big sigh of comfort and relief at around 7:35 and at 7:40 Sarah stopped breathing, went to sleep and rose to join the Lord! We praise GOD for all the past 5 1/2 weeks that she was able to hang in there and fight to spread God's work throughout the states.
We are appealing to you first, please make Sarah's short but brief part of the TPI experience known via your news updates and homepage.
Secondly, if our bloodwork can help further research, please contact us or our doctors immediately!
Last but not least, PLEASE let us know where we can forward donations to the trust research in Sarah's name ASAP-we are holding services on Thursday October 29, 1998 at our church and her funeral services will be on Friday Oct. 30, 1998. We have requested donations for the TPI trust research be made in Sarah's name to our church and then as soon as you notify us where to send the money, we will forward it onto the program.
Sarah was 5 months & 6 days old. Sarah's blood count on Tues. 10-20-98 was hemoglobin 11.6, hematocrit 37, retic 24. So that aspect was very good. Sarah had been nursing and taking a bottle throughout the last 6 weeks and even through Sunday evening, she continued to nurse.
We will strongly pursue the most rigid awareness campaign here with guidance from Dave (We hope) and we know that the Lord is over seeing this research and wish to continue to be a part in it! **** If you need further verification of Sarah's diagnosis, please contact any of the CC: noted doctors at their addresses.
Thanks again for all the info we were able to obtain and we will continue to pray for the rest of the children and their families. PLEASE Keep in touch--In GOD's Love"
If you would like to help, or find out more about TPI deficiency, please E-Mail Dave Stewardson at:
Send E-Mail to Dave Stewardson (Father of James)