FEBRUARY 28, 2008
Well, we have decided to go to Cincinnati, Ohio for the PSARP (Posterior Saggitial Anorectoplasty), also called the "Pull
Through Procedure." Dr. Alberto Pena is the doctor who pioneered this procedure 25 years ago, and he is the one who
will actually be doing the surgery for us. We decided to go to Cincinnati because, as our pediatric surgeon in
Fort Worth said, it is the "mecca" for this type of surgery. Dr. Pena founded the Colorectal Center for Children there
at Cincinnati Childrens Hospital, he invented the surgery, he's been doing it for twenty five years, and he does approximately
100 per year. That sounded like enough reasons for us to go there rather than having her surgery done in Fort Worth.
We will be flying out on March 24th. On the 25th, Brittan will be admitted at 10:00 a.m. that morning, and that
is going to be a pretty rough day, as they clean out her system and prep her for surgery. Then Monday, the 26th, she
will have the actual surgery. Please keep us on your prayer list for these couple of days, especially! Of course
any parent worries about their child having surgery, but we know she is in THE BEST hands there! There is no second
guessing ourselves at this point, since we will be going to the best of the best. We just have to trust the doctors
and God. They have told us to expect to be there at least seven days for recovery time, possibly more, and they
want to see her fourteen days after surgery, so we will be there for a while it looks like. We are still figuring out
all the details, and we will keep this site updated with new info as soon as it becomes available.
Also, tomorrow, March 1st, we see the neurosurgeon, to discuss the spinal surgery that Brttan will have to have.
We don't know when this will be yet, but we'll let everyone know asap!
MARCH 1, 2007
We went to the neurosurgeon's office today to discuss Brittan's surgery for the Tethered Cord. The surgeon told
us that in a lot of instances it is hard to say if the surgery is absolutely necessary, but in a few instances
it is easy to tell. Brittan's case was one where it was easy to tell, so the surgery is definitely needed. She
has a tetherd spinal cord, which means it is connected to tissue where it should not be. It also extends down further
than normal and, on the end, it has what is called a fatty filum, sort of like a long extra line hanging down, but stretched
like a rubber band. The doctor explained the surgery will be sort of like cutting the stretched rubber band, which is
her spinal cord. So we are facing this surgery now, next week! The doctor said it would be better to have it right
away, so next Friday, March 9th, is when we are scheduled for. We are waiting to hear back if this will impact the surgery
we already have scheduled in Cincinnati on the 26th of March. The neurosurgeon here did not seem to think it would be
a problem, but I have called the doctor there to confirm that. More to follow!
MARCH 13, 2008
Brittan had her spinal surgery on Friday the 9th. We had to get up at 4:30 a.m. and be there at Cook Children's
Hospital at 5:30 a.m. The intake nurses were wonderful. We went up to the second floor, where Brittan got an IV
and we got to hold her for a while before the surgery, while the nurses and anesthesia got her ready. Dr. Honeycutt,
the neurosurgeon, came in to talk to us before hand to explain what all he would be doing. He even asked to pray with
us, which we appreciated very much! The surgery started at about 7:30 a.m. We sat in the surgery waiting area
during the procedure. That was a very long wait, it seemed like, but really it was only about an hour and a half.
The nurse even called us about half way through from the O.R. to let us kow everything was going fine. After the surgery,
Dr. Honeycutt came out and told us everything went fine. No problems with the surgery! We then spent the rest
of the afternoon in the step-down unit letting Brittan recover and waiting on our private room to be ready. Nurse Paul
was an absolute angel there, and took exceptional care of her.
Brittan seemed to do fine until we got her moved into the private room. I think the move from one bed to the transport
bed, to the bed in the room was a little too much and she was crying a lot. Once the nurse gave her some pain medication,
though, she was fine. After that, she really didn't cry that much., and I spent the night there with her, while
Ronnie spent the night at home. The hospital visitor bed/couch is just too small for two people! The next
day she was even cooing and "talking", and all the floor nurses, even the ones not assigned to our room, kept making
up excuses to come in "to see the cute baby!"
We got to bring her home that same day (Saturday) and she had a pretty good day. Gran and MeeMaw came to visit
for a little while. Sunday was another story...every time she woke up, she cried. This was a new cry for Mom to
hear...one that meant "I hurt!!!!" So she spent most of the day on pain medication, just sleeping. Monday
was much better! She only had to take a little Tylenol and she now seems to be back to "normal" pretty much! The
stitches in the bottom part of her back seem to be doing just fine, and will just dissolve away. We just have
to do a follow up with Dr. Honeycutt. He said that the surgery went fine, we just want to make sure and monitor her
closely for any type of neurological symptoms in the future since the cord can re-tether. Some children do have to have
multiple surgeries, usually around 4-6 years old and around 10 since those are "growth spurt years", but hopefully we won't
have to go through this again at all! Thanks for everyone's prayers!!!! We will be heading to Cincinnati on the
24th for the other two surgeries! More to come!!!!!
MARCH 27th, 2007 UPDATE FROM
Well, we are finally settled in after the surgery. I'm sorry I didn't get to update the site yesterday, but the
hospital only loans out laptops until 5:00 pm and that was about the time we got back to the private room where Brittan is
Brittan's surgery went fine. The pull-through (PSARP) was a success. We will just have to monitor her
in the future to really see the actual long term results, but for now it looks like it might be ok. It is just
hard to know exactly what her chances of normal bowel and bladder control are at this point. Dr. Pena
was very gracious and kind. What an incredible man to meet in person! He told us that his study of 266 patients
with similar conditions to Brittan's will be finished in a couple of months and he will have more definitive answers maybe
at that point. She does have an unusual combination of conditions, though, and she is going to be followed by Dr. Pena,
because of this. We also had another doctor, Dr. Breach, who performed surgery on Brittan with Dr. Pena.
Evidently when they did the exploratory part of the procedure, there were additional problems with her reproductive organs
that Dr. Breach, who is a gynecologist, worked on. We are still waiting to talk to her today, since she had to leave
immediately after the surgery yesterday. The good news, though, was there was no vesicostomy needed! That
is the hole from the bladder to her abdomen that we expected to also have done. After her additional testing last week,
the films showed no reflux of urine from her bladder into her kidneys. After she recovers from this surgery we will
have her go through additional testing to make sure we got true results, though. She is recovering now. They will
keep her ten days, with no food, so please pray for her comfort more than anything now. She is definitely an answered
prayer on so many other fronts! And, of course, she is charming all the nurses! Everyone we have passed in the
halls to and from surgery and everyone caring for her have all commented on how cute she is! I'll try to write more
asap! Our love to everyone!! - Amber, Ronnie and Itty Bitty Britty
FRIDAY, MARCH 30
Hello everyone! I know you have anxiously been awaiting an update on Brittan and her condition. I am so sorry
not to have done it before now. The laptops at the hospital crash constantly and I tried to type lengthy updates several times,
only to have them lost! I finally am able to use the computer at the Ronald McDonald house (there is always a wait it
Brittan is doing great. We are on Day 5 out of 10 without food. She is getting IV fluids and nutrition, though.
The way I understand it, because the cells in her body are getting the nutrition (i.e. sugars and lipids) intraveneously,
the brain is not really sending the "hunger signal" to her body, so she is content for the most part. It is still
hard for both of us though, since she has been breastfed only since birth. She is not getting the closeness
to me that she usually does. It could be my imagination, but I see her little forehead wrinkle up in a frown at me...like
she's saying "Hey! What's going on here??????" The nurses are backing off the tylenol from every four hours
to every eight, and she seems to be doing better until about the hour before she is due for the next dose of medicine.
She whines and cries and it just breaks my heart! She had to have a dose of morphine yesterday, because she was gassy
and crying a lot, but that's really the only time she has needed it. She is sleeping this morning, so Ronnie and I took
a break from the hospital room. I've been sleeping with her there and Ronnie's been sleeping at the RM house.
I think he may stay with her tonight, since he is flying back tomorrow.
Dr. Breach came and talked to us more about her female issues. Part of her Mullerian tract (or what becomes the female
reproductive system) duplicated itself. She has a didelphic uterus - see more at http://encyclopedia.thefreedictionary.com/Didelphic+uteris
. She actually said that she did not expect any problems hormonally, so she should go through puberty normally.
Dr. Breach also said there are very good chances that she will be able to have a child some day, which is different than what
the other doctor told us. So ultimately, even though these issues were a surprise, there do not seem to be too many long term
Dr. Breach also mentioned a study that the genetics department is doing at the hospital so we have volunteered to be
tested and to be part of their study. Hopefully our heartache and Brittan's brave fight will one day turn into answers
for someone else's child. The team they have assembled at this hospital is amazing. Really Cincinnati Childrens'
was renowned for it's urology department. Then a couple of years ago, the hospital recruited Dr. Pena and his whole
colorectal team. Now, with Dr. Breach's expertise in pediatric gynecology, and the genetics department being involved,
maybe there will be answers for all of us someday soon as to why these kinds of defects happen. This is something we
can all specifically pray for!
And, we just wanted to thank everyone who has helped us in this journey! So many of you have prayed for our family,
have given us extra money to help cover her expenses, have sent beautiful notes and cards, and several extra special angels
have done some specific things that we can never thank you enough for! Bless you all........you know who you are!!!!!!!!!!
Love, Brittan, Ronnie & Amber
APRIL 2, 2007
Opening day for the Cincinnati Reds
Well, who knew we would be here for such a huge holiday for Cincinnati? Today is opening day for the Reds, and
evidently nearly everyone takes off of work and throws a party! We didn't make the parade this morning since we
don't have a car, but the RM house did serve hotdogs and crackerjack for lunch and gave out little prizes....Brittan won a
TY "Teenie Beenie Bopper" Baseball Player! The child life person also came around and gave her the cutest little black
teddy bear for "Opening Day".....AND..... she also got an Easter basket with a grey teddy bear from the Ronald McDonald house!
What a neat bunch of surprises!!!!!
We had to say "goodbye" to our new friends Kristin (the Mom) and Gavin (the cutest little boy) a couple of nights ago...they
were in the room next to us the hospital and at the RM house. Kristin and I met through the PTN website before we were
all in Cincinnati. Gavin is so precious, and he is just a week or so older than Brittan! We miss them already!
We also got to meet Kamon and his family (Jenna and Dave) that we met through the PTN site! They were such a nice family
to meet and sent Brittan some "get well" balloons from the hospital gift shop! She absolutely loves balloons!
Her daddy and I had bought her one, but now she loves to stare at all three for long periods of time! Brittan also received
a little taggie stuffed caterpiller from our new Fort Worth PTN friends, Mindy and Ellie, the day of surgery. It was
so neat to have a little present waiting for her when she got out. That was very thoughtful!!!! Mindy
and Ellie have been to Cincinnati already so we are "following in their footsteps" so to speak! Thank you so much
for all the thoughtful things everyone has done for Brittan and us! We are so blessed!!!
As far as Britt's condition, she seems to be fine. She has little crying/cranky spells, but for the most part she
acts like everything is "peachy-keen!" This is the boring part for now....she should get out of the hospital on
Thursday. We will have to be seen back in clinic after that. They only have clinic on Fridays, which we can't
go in until fourteen days after surgery, so that would be April 13th (Mee-Maw's birthday!!!!!) But....the
nurse may try to fit us in sooner for a private consult with Dr. Pena on Wednesday the 11th. We would love to come home
on the 12th if possible, otherwise we will most likely be back on the 14th. We will let everyone know as soon as we
know for sure! Take care and we will see you soon!!!!
WEDNESDAY - APRIL 4, 2007
Guess what???????????? We are getting out of the hospital a day early. Yeah!!!!!!! Brittan is being
discharged today. We are still waiting for the doctors to come and discuss aftercare, etc. so it may be late today.
We are still waiting to find out for sure when we get to attend clinic, though. Once we know that for sure, we
will know when we can come home to Texas! We miss everyone!!
THURSDAY, APRIL 5th, 2007
Well we had a great evening together last night...just the two of us! Brittan finally got out of the hospital and
we both slept at the RM house. Brittan does so good adapting to new situations. She slept in a new crib with no
problems, straight through the night! First thing this morning, we had to go back to radiology again and take one more
x-ray. Then we spent the rest of the day just hanging around waiting for fedex to arrive for our pick-up.
What an ordeal just to get Brittan's frozen "food" home! Anyway, fedex finally showed up, and that is one less thing
to worry about now. She is so happy that she is getting to eat "real food" again! And the best news is that
we get to attend clinic tomorrow and WE GET TO COME HOME ON SATURDAY!!!!!!!!!!!!!!! Yes...I am "yelling" in all
caps! I am so excited to get us home and back to our normal life. We can't wait to see everyone!!! Love,
Amber and Britt
APRIL 17, 2007 - From Fort Worth, with Love!
Well, I am finally updating Brittan's website after being home for over a week. I apologize for the delay, but
after we finally made it home, it was just such a relief to have her major surgery done and over with, that I think I just
took a mental break from it for a while. Ronnie and I have just enjoyed having a sweet, fun little girl to play with!
Brittan and I flew home on Saturday the 7th. This was such a great surprise for us. The doctor initially
told us we would have to stay through the 13th for clinic on that Friday, but he bent his own rules and saw us a couple of
days early on Friday the 6th! We were SO THRILLED to be home for Easter!
(to be continued...)
MAY 7, 2007
Just thought I would update everyone about Brittan's progress since we've been home. She saw the cardiologist,
and has no signs of the heart arrythmia! Yeah! He is still monitoring the PDA (small hole in between chambers
of her heart) but he was very optimistic about it, and said he just needs to see her back in about four months for a follow
up. Her pediatrician said she is looking good. She is in the tenth percentile for height and the twenty-fifth
percentile for weight, so she is petite, but at least she is on the chart! Lots of IA kids are very small. The
pediatric surgeon here in Fort Worth saw her for a follow up to her PSARP surgery and he said she looks great. We are
just waiting on the additional kidney/bladder testing to be done on the 16th of this month to see if the vesicostomy surgery
can be ruled out and if we need to continue catheterization. The biggest surprise this month was our visit to the geneticist!
She actually re-diagnosed Brittan as having Caudal Regression Syndrome, rather than VATER association. The list of characterisitcs
is so similar, but CRS (no...not THAT kind of CRS (smile)) is a little bit more rare...1 in 7500 births. So, we are
still studying up on this but really at this point the doctor said it doesn't make a lot of difference what it's called.
We've treated her for the problems, and the best news is that it is not hereditary! So it looks like we could possibly
have a little brother or sister for Brittan one day...God willing! Just looking back over the last month makes me so
grateful and thankful for everyone's love and support! We have had so many answered prayers already! And we also
want to thank our church family for caring so much and holding us up in such a challenging time. We love everyone so
mcuh! Thank you again!!!!!!!!!!!!!!! Love, Amber, Ronnie, & Brttan
MAY 17, 2007
Well, we went to the hopsital for the urodynamics study yesterday. It took forever since the machine broke right
before our appontment (of course!) But...it was so much better than the last time! The nurse this time was so
very nice and knew what she was doing. We found out that she is actually the doctor's regular nurse and the one we were
subjected to, last time, was just a fill in! That explains a lot! Anyway, Britt did great. She cried during
several parts, but for the most part it was a lot easier this time. She took a bottle of pedialyte during part of the
test and that helped keep her calm. After the test, we pretty much got good news/bad news from the doctor. He
said that she is still refluxing urine into her kidneys (that's bad) and that she does not have control over the bladderneck
(the part of the urethra that controls urine when you laugh or cough), but the second problem is actually helping her in another
aspect. The "high pressure bladder" that he was so extremely comcerned about last time, seems to be less worrisome.
He thinks that the leaking bladderneck is relieving pressure from the bladder, so that's good because it keeps her kidneys
from being damaged. The best news is that he does not think the vesicostomy surgery is necessary at this time! YEAH!!!!!
He also said that catheterizing her is not doing all that much, since she is also able to urinate on her own, just not completey.
He will be recommending that we do not have to do that either. Double yeah!!!!! We are still not "out of the woods"
so to speak, but that is the best news that we could have received yesterday. I know it is because of all of the prayer
lifted up on her behalf. Thank you again for the MANY people who continue to pray for her! She is on so many prayer
lists at different churches and, of course, remembered by so many individuals in prayer that we will never
be able to thank everyone personally or enough. Just know that it has kept us comforted during everything she has been
through. We will post more info after next week. She has a renal sonogram appointment on Tuesday, the appointment
with the urologist on Thursday and another follow up with the pediatric surgeon on Friday. All our love! Amber,
Ronnie and Brittan
MAY 31, 2007
We are so looking forward to seeing everyone this Sunday! Thank you so much for the wonderful response to the fundraiser!
First, I just want thank Angi Gillespie for coordinating this whole event for us. She is a wonderful friend to take
on such a major event like this! And also a special thanks to Leon Sanders and Judy Duke with our church, for allowing
us to have it there at church and all the additional help in coordinating everything! And thank you from the bottom
of our hearts to everyone who donated and who will be attending. We can't wait for everyone to get to see Brittan!
With that said...just a quick update from the doctors last week. We got good news/bad news, but for the most part
it was good! She does not have to have the vesicostomy, though she will have to have bladder augmentation surgery when
she is around four or five. She will probably be in diapers that whole time, but she may surprise us all! She
has already improved so much since the doctors initially saw her that we are just going to remain hopeful that God will answer
our prayers for healing, if that is his will. The problem with her bladder is actually a blessing in disguise,
since it is relieving the pressure and not damaging the kidneys as much as the doctors initially thought. We are just
relieved that we get a little bit of a break from major surgeries for now. She still is going through dilations from
her PSARP surgery, and that will continue for about four more months. We got to stop catheterizing her - yeah!
Now she will just have a highly regimented and restricted diet that we have to follow. Overall she has made so much
progress and we are just so thankful!!! See you Sunday!!!!!!!!
JUNE 26, 2007
Thank you so much to everyone who attended Brittan's fundraiser and for everyone who worked so hard to make it all happen.
I truly believe that God gives you a special needs child, not to have you deal with heartache and worry, but to
show you how much you are loved by everyone around you. With every person who has prayed for Brittan and our family
and every person who has helped in their own way, whether great or small, we have definitely felt the hand of God working
among his people.
We really have had a little bit of a break from doctors and testing for the last month, but it looks like we are in for
a new problem area now. After going to the pediatrician last Friday, the doctor discovered that Brittan's
legs appear to be different lengths. We are now being referred to an orthopedist, which we have an appointment on the
16th of July so we will know more then. Just when it seems you are out of the woods (at least for a while), we have
another setback. But we are optimistic that they won't really have to do much while she is still a baby. We just
have lots of questions at this point! We'll post more when we know more!
She also will need to go back for another full spinal MRI in about 3-4 months, so the neurosurgeon can look at the syrinx,
or fluid pocket, on her spine. We are hoping it went down in size or at least stayed the same, and has not grown since
her spinal surgery. Since she has to have anesthesia for that, we are hoping they can do her leg MRI at the same time.
We'll keep our fingers crossed.
AND......I have also started a carepage for Brittan.....it is a much more interactive site where everyone can leave messages
back easily. We hope we see you there.....you can find it at......
All our love, The Fergasons
Click here to visit the Care Page now!
SEPTEMBER 19, 2007
I just wanted to let everyone know that Brittan has some upcoming testing that we are a little nervous about. On
September 24th, she will go in for a renal ultrasound to look at her kidneys and bladder. We are hoping that her kidneys
are not being damaged by the reflux of urine that she was having. She has been on antibiotics since she was born, to
keep her from having UTI's and bladder infections, but this will let us know if we made the right decision when we decided
to stop catheterising her. The doctor said the amount of cathing we were doing was not making a significant impact,
anyway, but we just hope the situation has improved, not worsened after that decision. We see the doctor the same day
to read the results, so we should know soon.
Brittan also has to go in for another full spinal MRI on October 4th, so if you will say extra prayers for her that day,
we would appreciate it. She has to be fully sedated, so it is always scary when they have to knock her out. They
are taking a look at the syrinx (like a fluid pocket) in her spine, to see if has stayed the same or gotten smaller since
her spinal surgery. If it has gotten larger, then she may still have some underlying problems, but we are hopeful that
it will be good news. She does not seem to be having any neurologic symptoms from the tethered cord. Wish us luck
ALSO...I have to brag a little! Brittan was signed to the Kim Dawson Modeling Agency out of Dallas and just went
on her first photo shoot! She will be in an ad for the JC Penney outlet during the holiday season.
I'm not sure if it will be an in-store photo or catalogue, so look for her in a cream colored fancy dress, with black velour.
She is such a ham in front of the camera. She made her first paycheck in her very short life, and it is going straight
into her 529 college savings account! It's never too early and college isn't getting any cheaper - ha-ha! Anyway,
the director called her a "pro", and that was only her first time! Anyway, we hope she gets some more photo sessions
booked soon. She and I both had lots of fun!
Keep us in your prayers! All our love.....Amber, Ronnie and Itty Bitty Britty
DECEMBER 10, 2007
Well, as a lot of you know, the MRI did not go well. The syrinx is larger not smaller. The neurosurgeon has
recommended another spinal surgery. We then sought a second opinion with the neurosurgeon in Cincinnati where Dr. Pena,
her colorectal surgeon, is. Long story short...he does NOT recommend surgery. I guess we will be seeking a third
opinion now. It's just very frustrating......back and forth bewteen doctors with no return phone calls and no answers.
Sorry to be a downer but this just really stinks. Anyway, we are just trying to make it through Christmas and then we
will see what we need to do. Anyway, merry XMAS to you and yours!!!! Love, The Fergasons
OCTOBER 2010 -
Wow! Four years and I can't even believe everything that has happened and all that we have survived! Brittan
had her fourth major surgery in May and we finally just had testing done to confirm that her one kidney is no longer being
damaged form the kidney reflux. This is a major blessing. We hope to keep the one kidney healthy and she only
has annual follow ups now. That is the very best we could hope for. Our main concern continues to be her spinal
cord, and that is just unknown. Some kids have had one surgery and they are done for life.....some have twenty...Brittan
has had two and we hope there will be NONE in the future. Please keep us in your prayers, We believe in the power
of prayer and know that the love and support from our many friends has been what has sustained us.
Love, Amber Fergason
Thank you for your love and support! The Fergasons...Brittan, Ronnie & Amber