the promise of stem cell therapy

These photomicrograph cardiac stem cells isolated from a mouse

This article helps explain why we're passionate about CHD research! We remain hopeful. On to the article...

Stem cells show promise in repairing a child's heart

Visionaries in the field of cardiac therapeutics have long looked to the future when a damaged heart could be rebuilt or repaired by using one's own heart cells. A study published in the February issue of Circulation, a scientific journal of the American Heart Association, shows that heart stem cells from children with congenital heart disease were able to rebuild the damaged heart in the laboratory.

Sunjay Kaushal, MD, PhD, surgeon in the Division of Cardiovascular Thoracic Surgery at Children's Memorial Hospital and assistant professor of surgery at Northwestern University Feinberg School of Medicine, who headed the study, believes these results show great promise for the growing number of children with congenital heart problems. With this potential therapy option these children may avoid the need for a heart transplant.

"Due to the advances in surgical and medical therapies, many children born with cardiomyopathy or other congenital heart defects are living longer but may eventually succumb to heart failure," said Kaushal. "This project has generated important pre-clinical laboratory data showing that we may be able to use the patient's own heart stem cells to rebuild their hearts, allowing these children to potentially live longer and have more productive lives."

Cells were obtained from patients ranging in age from a few days after birth to 13 years who were undergoing routine congenital cardiac surgery. Findings show that the number of heart stem cells was greatest in neonates and then rapidly decreased with age, and that the highest numbers of these stem cells are located in the upper right chamber of the heart, or the right atrium. The study also showed that the cardiac stem cells are functional and have the potential for use in repairing the damaged heart. Up until now, heart stem cell studies have addressed the adult diseased heart, but this is the first and largest systematic study to focus on children.

"Heart disease in children is different than heart disease in adults," said Kaushal. "Whereas adults might suffer heart failure from coronary artery disease or atherosclerosis, heart failure in children primarily occurs because they acquire cardiomyopathy or have a congenital condition in which the heart chambers are small or in the wrong position causing the heart to pump inefficiently. The potential of cardiac stem cell therapy for children is truly exciting," said Kaushal. Pending FDA approval, Kaushal hopes to begin clinical trials with children in the fall.

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The study was funded by grants from the National Institutes of Health, the Thoracic Surgical Foundation for Research and Education, the Children's Heart Foundation and the North Suburban Medical Research Junior Board.

To access the article on line go to: http://circ.ahajournals.org/cgi/reprint/CIRCULATIONAHA.110.971622v1?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=Mishra&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT
Children's Memorial Hospital is one of the top pediatric hospitals in the country according to U.S. News & World Report. It is the pediatric training hospital for Northwestern University Feinberg School of Medicine.

Contact: Julie Pesch
jpesch@childrensmemorial.org
773-880-3055
Children's Memorial Hospital

January 27,2011 (article retreived from Little Hearts. Org)

Build-A-Bear Workshop supports CHD!

Today kicks off CHD Awareness Week Feb. 7-14th! I'm hoping to post something relevant to CHD (Congenital Heart Defects) each day this week like I have in the past. Click here or here read those posts.

The night before Maddie's cath, we went to Build-A-Bear Workshop, thinking this would be a fun activity for her and creating something she could hold and cuddle in pre-op and during recovery would help ease the whole cath experience. I felt compelled, because this month only, Build-A-Bear is asking for a $1.00 donation at check-out to support Children's Heart Foundation! This is the largest foundation raising money towards CHD research. Maddie hadn't had a build-a-bear experience and we couldn't pass it up.

It seems that we are always being asked "would you like to donate towards_______?" at checkout lines, having to press Yes or No on the keypad. I've never been asked to support research for CHD...usually it's cancer or premature babies. But CHD is getting some awareness now and at a place created for children no less! $1.00 may not seem like much, but it's something and when your child's future depends on critical, life-saving research, every penny counts. I was thrilled to see CHD getting some attention...afterall, Congenital heart defects are the #1 birth defect. Nearly 1 in 100 babies is born with a CHD in the US.

So in "true Maddie fashion", she created a very cute teddy bear covered in hearts, with an added thumping heartbeat and pink, glittery, frilly dress. She named it "Tee-Dee" and was in heaven during her bear building experience! I highly recommend it :)
making a wish for her bear getting Tee-Dee all washed up!
helping create Tee-Dee's birth certificate
hugging Tee-Dee in pre-op before her cath last Friday

Go here to check it out! Thank you Build-A-Bear for helping spread awareness of little broken hearts!

a great pre-fontan cath!

Waiting in pre-op for a 1:45 minutes...she was a very good girl. Once in a while, her tummy would growl and she'd ask, "what's that?" She's never remembered being hungry since I'm always trying to get calories in her!
Maddie sporting the hospital gown, she liked Tweety Bird she told me but not the gown. Her first tears came when we told her she had to wear it. I think she realized what was happening at this point but was happy and cheerful prior to this and through all of the exam, measurements and nurses/docs questions & consent forms! And once she had the versed, our babe relaxed and smiles just covered this sweet face.

Munching away on snacks in post-op. Dora the Explorer saved us here. She enjoyed watching Dora while having her post-op echo, eating jello, graham crackers, a popcicle and fishy crackers as well as two cups of apple juice. She was starving! Not eating after dessert the night before and no drinks after 6 am poses a bit of a challenge for a 2 year old! And for you heart mom's...watered down Country Time Lemonade can pose a problem as a "clear" fluid. Note to self: stick to the list of drinks your child can have pre-op!

We're waiting in recovery right now, one more hour to go before they'll let us drive home. Maddie's cath went really well: no tune-ups necessary, low pressures (which is what we wanted to learn) and it looks like she's ready for the Fontan. We'll know for sure after Dr.Chun presents her and discusses this with her surgeon.

We were pleased with Dr. Johnston's report--her PA's have remained opened and look good! She has a collateral that could have used a coil but because of its location, he decided not to risk putting one in. (It's from her SVC to her IVC, called an AVM vessel?) With the change in circulation after her Fontan, it shouldn't receive blood flow and won't pose a problem down the road without getting blood flow to it. He was able to access the catheter through her right groin and her neck. Two more teeny scars to add to her existing ones.

We had a good day- she was able to get Versed before going back (although I spilt half of it giving it to her) and I was able to go back with her when she was put under. She chose "strawberry" gas and kept giggling as the nurse was covering her mouth with the mask. After the cath, she was a bit unruly in recovery so I was paged to go back with her. The entire procedure took just under 2 hours. We had our favorite anesthesiologist, Dr. Eisses, and we got to see our favorite echo sonographer, Ray!- we had a great visit with her and she was able to get wonderful pictures of Maddie's heart. Plus Dr. Chun came by to see us and discuss the results. He mentioned that her PA's look great--almost as if they've been untouched! Seems like we're all at ease and on the same page of when the timing is best for her Fontan. We do feel fortunate to have such a great team here at Children's and so many love our Maddie in this place. Thank you for your prayers today and checking in on Miss Mooms!

do the (clap, clap) potty dance!!!

Yes, it's true! Someone is wearing princess panties and using the toilet now (thanks to Grandma Allred for jumpstarting the process!) We're impressed. Maddie was more ready than I gave her credit for. She's caught on very quickly and so proud of herself. We are too. Our baby is growing up!

upcoming cath

In two weeks, we'll be heading back over to Seattle for Maddie's 'pre-fontan' heart catheterization. This will be the 6th time she's had to undergo this type of procedure, hopefully this cath's purpose will be more investigative rather than interventional. Doctors will be checking her heart's pressures, the valves, chambers, and getting an overall look at her heart's function to determine whether she's ready for the last surgery, the Fontan. If she needs a tune-up while they're in there, they'll intervene. She's currently weighing in at 31 lbs. which is around 14 kilos...the goal for surgery is 15 kilos, so we're getting close. When I talked to the nurse the other day after Maddie got into her baby asprin bottle (all was ok though) she mentioned that the team of cardiologists & surgeons will meet on her case the following Monday after the cath. Together, these 26 doctors will come up with a plan on Maddie's surgery and then we'll get the call to schedule it. We're told that we'll get a say in this one, which is much different than her past two surgeries, they were both rushed and necessary right then. This makes going into the Fontan much different for us. We've never really had a choice on when is the best time for Maddie and for our family.

Are we ready? In some ways, yes--getting passed this last big hurdle will be nice. It will feel like we can get on with life. Our daughter won't be so blue and out of breath all of the time. Her oxygen saturations will hopefully be in the 90's versus the 70's that they're in now. I'm anxious to see the "new Maddie" after her Fontan. She will be healthy going into surgery, which is a big plus. But in other ways, how do you prepare to have your child cut on again? It's open heart surgery, she'll be on heart-lung bypass, she'll have a stay in the CICU (Cardiac Intensive Care Unit), she'll be on a ventilator, she'll have many life-saving drugs pumped into her little body, and there will be several tubes and wires. It's simply...scary.

But I do believe that the good this surgery can bring far out-weighs the risks and fears it brings. If all goes as we plan, Maddie will have the chance to grow up feeling well, not huffing, puffing and coughing like she does now. Not having to climb into my lap several times a day, remarking "I tidered, hode me". She will run more, play more, jump more, climb the stairs more throughout the day, instead of wanting to be carried around and held. She will gain more independence and growth after this final surgery. Hopefully, she's young enough that she won't remember it later. This is what I will focus on. And that the Fontan will finally be behind us.

peace & joy

We had a visit from the Maxwell's this week! We so enjoyed their company and the kids had a blast playing with Gavin, Teagan and watching baby Bode cruise and crawl around.
The girls picked right up where they left off. They are true friends...heart sisters.
The topic of our visits used to revolve around surgeries, hospital stays, feeding issues, future worries...even though we still have a lot of "heart talk" we seem to visit more about normal life now. This is a good thing. We've made growth and are content with the paths we're on. Yesterday brought me much peace and joy. Watching these two interact is precious...I'm so grateful God knew we'd need a heart soul mate to share this journey with. Teagan and her family are just this and have been with us from the very beginning. We are grateful for their friendship.
These two played in Moom's kitchen, making coffee and giggling with each other. Maddie and Teagan are a very sweet pair. They've made our hearts full; through their struggles and perseverance we've been taught so much. I look at this picture and can't help but think that someday, they will be walking away from us as teenagers, going off to summer camp together in this very same way. We have much to look forward to.

a very long Christmas post...

December flew by. We had a busy, busy, busy month filled with Christmas programs, parties, family gatherings and we finished out the month with a trip to Disneyland, courtesy of Grandma and Pa Allred and our farm. Here's a recap in pictures...
Cade's preschool program...he was a wise man. Very cute, my class did an outstanding job if I do say so myself with our version of "Christmas in a Manger" and their songs.
Right before break, we had a fun pajama day and celebrated with a party! Preschool, jammies and Christmas make for a crazy but totally fun day! The kid's frosted/decorated upside-down ice cream cones and their "trees" turned out fabulous!
Jace also had pajama day and a fun holiday party in his 1st grade classroom. I was able to help and the kid's enjoyed frosting/decorating gingerbread cookies.
Jace in his school program...he's hard to see, my camera does not take pics well in this gym.
Maddie stayed fairly healthy all of December until our trip to D-land. She tagged along to most parties and programs and is starting to feel better since being home.
Family get-togethers started early for us, the 20th. We had a really fun night down at mom and dad's, these are my brothers...we've always taken a picture like this in front of the tree. I'm the middle child :)
Nany and Ba (my parents) with the grandkids...there is one more on the way, Ryan and Jess will be having a baby boy in March!
and the "fab 5"... Bryan and I celebrated 10 years of marriage on the 22nd! We still need to plan a date, Subway was fun but not that romantic :) Why did we get married so close to Christmas?
Maddie and cousin Tripp (whom she lovingly calls Trippy or baby). My brother Jason and nephew Jett were hit head-on in a car accident, so mom brought me Tripp and we loved having him come play. Only by God's grace, Jason and Jett were ok...Jason did have to put down a horse that was in his horse trailer during the wreck. It was very sobering for us all and made Christmas that much more special with knowing how close their/all of our lives could have changed. Prayers for the other vehicle passengers...3/4 are in critical condition the last we heard.
After church on Christmas Eve. The kid's are always pumped to pose for pictures, especially when they're eagerly awaiting present opening... my parents came up here for dinner and we let the kids open most of their gifts since Bryan had to feed bright and early Xmas morning at the feedlot. In fact, he woke everyone up Xmas morning :)
This guy was a bit disappointed in Santa, he delivered a castle but not a "lego" one like Caders had asked for. He's hard to please sometimes. Maybe Santa will deliver the right goods next year buddy. Miss Maddie loved everything, she'd say "Ooooh, my favorite" with each gift she opened then quickly wanted us to open up the box up so she could play with it. Her brothers enjoyed telling her, "Come on Maddie, Rip it like you want it!" when she'd carefully open each gift.

Christmas morning, we always go out to Bryan's parents, Pa and Grandma's. The brunch is always yummy and our day here is very laid back, which I love. By Christmas day, I'm so tired...probably like most of you mom's.
Pa and Grandma got Maddie and her cousin Jill darling metal pedal cars. She's adorable "Flinestoning" around it in (hasn't figured out pedals yet).

Christmas Night, we had the entire Stewart family up to our home. We played some super fun Minute-to-Win-It games, ate lots of Mexican Food and had a $10 gift exchange. I loved having all of my aunts and uncles, grandma and cousins here. I'm still laughing. Wished I had pics to share. The next day, we packed up for our trip and headed out to the big Allred Christmas at Jerry & Chriss' home. Always good food and conversation at these gatherings (no pics here either). So the Magic Kingdom was beautiful but PACKED. The day that we got there, we went over to the park and couldn't get in at 12:00...they'd already reached capacity and didn't allow anymore people into Disneyland! We had 2 great days of weather then the last 3 were so-so. Rainy, cold, windy. Although it was better than home-- temps in the teens.
This was Maddie's face when she first saw "binkerbell" (her favorite besides "rella" Cinderella)
Waiting for ponchos--man it poured!
Jace loved the rides and is our thrill-seeker...Splash Mountain was his favorite, even after getting wet. Oh yes, we ate Churros everyday too. They're yummy any time of day and can be substituted for a meal we decided. We also hit Knott's which was just as packed as D-land but we did take this rollercoaster man on the wooden coaster "The Ghostrider"-SCARY and so fun!
Cade on the carousel in Fantasy Land. The waits on lines were all very long...at least 40-90 minutes. Gave us lots of quality time together and sore backs from holding little ones.
Aunt Lesa booked a fun night at "Medieval Times" where we ate with our hands, watched Knights joust and the king announced that Caden had slayed a dragon for the kingdom!
The last morning, we had a character dining experience at our hotel, The Grand. The boys loved the characters....Maddie only liked them far away. No posing with a fuzzy creature for her.

Allred grandkids...they're a cute and fun bunch :) We hope you enjoyed your holiday as well! Happy New Year!