....those who participate in this life with an attitude of Thanksgiving will receive its full promise. John McQuiston II, Always We Begin Again
Feeding tubes.
Hospital stays.
Special diets.
No medical answers.
Not exactly situation that generate attitudes of Thanksgiving.
It takes a special heart to see the positives when face with so many negatives. Maggie Guthrie and Craig Bigham have such hearts, and along with family and friends want that spirit of Thanksgiving to be the message that stems from their ten-month-old daughter's illness.
Brynne Bigham is a beautiful, happy baby. Always has been, according to Mom.
"She smiled about two seconds after she was born and hasn't quit since," Maggie said.
But at ten weeks, Brynne was vomiting constantly. The first of many hospital stays began. For twelve days in March of 2009, Brynne's family began a medical mystery tour that remains unsolved.
"She's been tested for everything under the sun," said Maggie. "She had multiple biopsies of several different organs and all tests came back normal. She just wouldn't gain weight."
Two years since that first visit, Brynne is still smiling even though doctors are still stumped. (See update below)
"we're consulting with a doctor from UCLA and have enrolled her in his research project at Mattel Children's Hospital in LA," said Maggie. "Look for us on 'Mystery Diagnosis' once we figure this thing out. That's why they call her...Mystery!"
It is no mystery where Maggie, a Wayland Baptist University graduate, and her crew get their optimism. A strong faith is a family hallmark, and this trial only makes that more evident.
"We know that God has a plan in all of this. God has blessed us with wonderful doctors, an awesome family and support system and communities of people who love us," said Maggie.
Brynne's condition requires around the clock care. In addition to a feeding pump that is attached 14 hours out of a 24-hour day, a port is checked weekly by home health care personnel to keep an eye on blood levels. And Brynne has not one but two men in her life who diligently take care of her every need. Dad Craig, who stepped away from his work at the Garza County juvenile Detention Center, and brother Koda make for an especially unique pair by devoting their time and energy to Brynne's constant care.
"Craig (a West Texas A&M graduate) stays home with Brynne and (big brother) Koda because of her medical needs," said Maggie. "He's awesome at it!"
This journey the Brynne's family is on doesn't really take them anywhere but home. Brynne's immune system is so low that the family has to be careful where they go and who's around.
"Even a simple cold can affect her negatively. The port in her chest pumps the nutrition directly into her blood stream so the risk of infection is high," said Maggie.
After twenty eight hospital stays (40+ as of March 2012), Brynne's family would be excused if morale were low and spirits dimmed. Who keeps them upbeat?
The little culprit herself.
"It has made our journey so much easier to have a happy baby," said Maggie. "She really loves people and her smile is her trademark."
That trademark Flanigan smile known to Borden County friends since Maggie and her siblings began attending school here in the early to mid-1990s has been passed on to Brynne and Koda. It is no surprise that optimism and love for people are in Brynne's DNA too.
Hopefully, doctors will soon determine what else lurks in that DNA.
Through all of this, though, what Brynne's family wants people to hear is this: we are blessed.
"We know that some families have harder things to deal with. We've met some of them along our way. God has truly blessed us with not having to go through that."
UPDATE: In March 2011, Brynne was diagnosed with an Immune Deficiency Disorder. While this disorder is not believed to be the answer to all of Brynne's issues, we praise God for a partial answer!
Because of the blessings, generosity, support and most importantly, prayers, we have received since 2009, we want to pay it forward and find a way to help others. Brynne's Smiles is our way of spreading the love of Christ and Sharing More In Life's Everyday Struggles.
UPDATE: In July 2011, we received a phone call from Dr. Martin at UCLA. Through extensive DNA testing, Dr. Martin and his team were able to identify the cause of Brynne's medical issues. Below are frequently asked questions and answers.
1. What's the diagnosis? Trichohepatoenteric Syndrome or THES
2. What does that mean? Basically, her body doesn't know what to do with food. It also involves her liver, heart, and immune system.
3. Can she eat? Yes, she can eat whatever (well, except pineapple which we recently discovered she is allergic to) and however much she wants to, we just don't always know how many diapers we'll have after she eats :) Her favorites are "lello" chips (tortilla chips) and guacamole, ranch dip, strawberries, red bell peppers, and cheese. She's not really in to sweets but she's getting better.
4. How'd she get THES? She was born with it. It is literally in her genes. Gene TTC37 to be exact. Craig and I both have a mutation in this gene. Our mutations are different (which proves we aren't related) but we both gave the mutated copy to Brynne. I actually gave the mutated copy to Koda too but Craig's good gene overrrides it.
5. Were there any indications/complications during pregnancy? Nope, not a single one. But it wouldn't have mattered if we had known anyway...ALL children are a blessing from God.
6. Will she grow out of it? No.
7. How many other people have THES? According to a paper written in 2010, THES is estimated to affect 1 in every 500,000 live births. The study had only 12 participants. As far as we know, there aren't many more than those 12 and we're pretty sure Brynne is currently the only one in the US.
8. What is the prognosis? We believe it is just like anyone else with or without a disease, it is however long God decides.
9. Will her hair grow? Well, we sure hope so. The "crazy hair", as we call it, is consistent with THES and has become one of her trademarks!
10. Is she limited to where she can go/what she can do? We'd like to say no, but honestly because of her immune deficiency she does not go to daycare. We try to keep her away from those that have anything contagious. Also, because of her "tubes" & "buttons", she is limited sometimes on her ability to do things like get wet or run and play whenever she wants. We've arranged her feeding schedules to be at night while she is sleeping so the limits are as little as possible.
11. What are those tubes? Well, she has a port and a g-button. Both are used for feeding and medicine. The port is like a permanent IV and she gets TPN (her food) everyday for 14 hours but we can "unhook" the part that you can see so she can take a bath, etc. The g-button allows us to put things directly in her stomach like formula and especially those things that are hard for her to swallow like medicine.
12. Has she experienced any developmental delays? The only delay she has experienced is in her ability to swallow food which she is in therapy for and has made great progress over the last four months. She did walk, talk, etc a little later than when Koda did but all children are different.
13. What made you think something was wrong? When Brynne was four days old, she started vomiting. At first, we thought nothing of it but as it continued and the number of diapers we had to change increased, as well as the fact that she wouldn't gain weight were all indications that something was up.
14. What is her biggest struggle? To gain weight. (don't we wish we all had the problem :) ) With her body not wanting to absorb the nutrients like the rest of us do, she is dependent on TPN that goes directly in to her blood stream and provides nearly all of her nutritional needs.
Ok, if you've made it this far you deserve some sort of award! We hope this sheds a little light on our sweet Brynne Brynne and what she deals with everyday (and she does it with a SMILE on her face). If you have any other questions, please feel free to ask.
Again, we cannot express the deep gratitude we have for each one of you that has supported us along this journey. Our God has truly blessed us in so many ways and we praise Him daily for allowing us this amazing opportunity to share His faithfulness.
UPDATE: In July 2011, we received a phone call from Dr. Martin at UCLA. Through extensive DNA testing, Dr. Martin and his team were able to identify the cause of Brynne's medical issues. Below are frequently asked questions and answers.
1. What's the diagnosis? Trichohepatoenteric Syndrome or THES
2. What does that mean? Basically, her body doesn't know what to do with food. It also involves her liver, heart, and immune system.
3. Can she eat? Yes, she can eat whatever (well, except pineapple which we recently discovered she is allergic to) and however much she wants to, we just don't always know how many diapers we'll have after she eats :) Her favorites are "lello" chips (tortilla chips) and guacamole, ranch dip, strawberries, red bell peppers, and cheese. She's not really in to sweets but she's getting better.
4. How'd she get THES? She was born with it. It is literally in her genes. Gene TTC37 to be exact. Craig and I both have a mutation in this gene. Our mutations are different (which proves we aren't related) but we both gave the mutated copy to Brynne. I actually gave the mutated copy to Koda too but Craig's good gene overrrides it.
5. Were there any indications/complications during pregnancy? Nope, not a single one. But it wouldn't have mattered if we had known anyway...ALL children are a blessing from God.
6. Will she grow out of it? No.
7. How many other people have THES? According to a paper written in 2010, THES is estimated to affect 1 in every 500,000 live births. The study had only 12 participants. As far as we know, there aren't many more than those 12 and we're pretty sure Brynne is currently the only one in the US.
8. What is the prognosis? We believe it is just like anyone else with or without a disease, it is however long God decides.
9. Will her hair grow? Well, we sure hope so. The "crazy hair", as we call it, is consistent with THES and has become one of her trademarks!
10. Is she limited to where she can go/what she can do? We'd like to say no, but honestly because of her immune deficiency she does not go to daycare. We try to keep her away from those that have anything contagious. Also, because of her "tubes" & "buttons", she is limited sometimes on her ability to do things like get wet or run and play whenever she wants. We've arranged her feeding schedules to be at night while she is sleeping so the limits are as little as possible.
11. What are those tubes? Well, she has a port and a g-button. Both are used for feeding and medicine. The port is like a permanent IV and she gets TPN (her food) everyday for 14 hours but we can "unhook" the part that you can see so she can take a bath, etc. The g-button allows us to put things directly in her stomach like formula and especially those things that are hard for her to swallow like medicine.
12. Has she experienced any developmental delays? The only delay she has experienced is in her ability to swallow food which she is in therapy for and has made great progress over the last four months. She did walk, talk, etc a little later than when Koda did but all children are different.
13. What made you think something was wrong? When Brynne was four days old, she started vomiting. At first, we thought nothing of it but as it continued and the number of diapers we had to change increased, as well as the fact that she wouldn't gain weight were all indications that something was up.
14. What is her biggest struggle? To gain weight. (don't we wish we all had the problem :) ) With her body not wanting to absorb the nutrients like the rest of us do, she is dependent on TPN that goes directly in to her blood stream and provides nearly all of her nutritional needs.
Ok, if you've made it this far you deserve some sort of award! We hope this sheds a little light on our sweet Brynne Brynne and what she deals with everyday (and she does it with a SMILE on her face). If you have any other questions, please feel free to ask.
Again, we cannot express the deep gratitude we have for each one of you that has supported us along this journey. Our God has truly blessed us in so many ways and we praise Him daily for allowing us this amazing opportunity to share His faithfulness.
