Tracking Rare Incidence Syndromes

I had the honor to email interview Dr. Debbie Bruns who works for the TRIS project. I introduced myself but she had already found the blog.

It's interesting to me to talk to people who spend time talking and thinking through what is happening today. Here's an excerpt of our talk:

before my Ph.D., I was an Educational Therapist in a Skilled Nursing Facility in NYC. I had two girls with t18 in my class. They were three years old at the time and this was in the early 1990's. I looked for information to help me adapt materials and activities for them and found nothing. No, I did find something, literature telling me children with t18 don't survive to their first birthday.

Read her entire interview here.

Some Interesting Interviews

Here's a link to some interesting interviews with two doctors about Trisomy babies. I might try to follow up with an interview of my own, since...is the one pediatrician saying that Trisomy babies who survive birth live past age 1? Why haven't I heard that??????

Talking With Trisomy's Ironman

Michael Hennessey's wife, Janelle stumbled across the Batblog and wrote a comment a few months ago. I went to Michael's site and was amazed and intrigued by what he is doing. I've done a lengthy - but really informative - interview with him. Please take it in.

If I was more of a newsman, I'd lead with Hennessey's brief take on medicine's stance on Trisomy. But I'll leave that for you to read. Instead...here's an interview excerpt:

I tell ya, you have to trust

Jesus to take a leap of faith especially on the

financial front. At the same time it is fun, and

humbling to see how He has worked so far.

So finally I will just say there are so many families

out there going through a pregnancy with a trisomy

baby or delivering one and they are simply on their

own to figure out what best to do for their precious

precious baby.

We hope that they know they are not

alone-in the unknowns, and the struggles, that there

are people out there that care, not because their

child may die, but because their child IS and we

celebrate that! We as a society can get so involved in

our own little worlds and the only time that we get

involved with a cause is when we are directly affected

by it.

Sometimes, They're Wrong. Kayden's Story

Tell us about kayden, how old he is, and how he’s doing?

Kayden was born June 19th 2001 so in a little over a week he will be 7 years old. Kayden is doing very well he signs mom and dad and will say mama. He sits up on his own and will scoot and roll to get into everything. Kayden does not walk but will take steps when holding on to him.

2. When was kayden diagnosed with trisomy 18? Why did doctors operate on him?

At At birth kayden had a cleft palette { hole in the roof of mouth} and his tongue totally blocked his airway this was called pier roban so he was airlifted to the minneapolis childrens hospital where he was trached for breathing and they thought he might have trisomy 18 becuase of the signs so they did testing and two weeks later we were told.

At that time kayden also had malrotation his bowls and intestines were twisted the wrong way and they had to be repaired or it could kill him. that same day they placed a feeding tube in his belly At 2 months old he had hernia repair and 6 months old they did the jaw surgery to help his airway and at 1 year old we did cleft pallet repair although his is slightly still open. when kayden was almost 2 years old we were finally able to get the trach out.

A year later a developed 91 eppisodes an hour of sleep apnea so they removed his uvula and adenoids this took the whole problem away. From age 3 till now kayden has spent very little time in the hospital most things if any are planed as he gets older he seams to be stronger sick wise. Now this last year kayden has been having some unexplaind breathing problems from time to time out of no where he gets a mucus plug and starts to choke we have to bag him and some times we call 911 we have ran alot of test and no one knows for sure whats going on but decided to put him on seizure meds to see if by chance its a type of seizure as these were happening 1 time a month and now its been about almost 5 months and he has had 1 episode so looks so far like its working.

Some would say why would you put your son through all this surgery well my answer to that is if you had a older child who you all of a sudden found out needed surgery or had cancer most would not hesitate to do all they could for there child so wy should it be any difernt for our children born with problems? kayden was never in pain as the Dr's did a very well job at keeping him comfortable. I always thought of it this way if the Dr's gave me a 10% chance to live and a 90% chance to die i know i would fight for that 10% chance so how could i do any less for my child?

Kayden has always been happy and full of life. you cans see by his photos how true that is. the photos i sent you with the bars on his face that was 6 month sold 2 days after surgery him smiling and pulling on those bars.

3. Does kayden have a heart condition like Zoe does?

Kayden has a small vsd and upper super pulmonary stenoses. most cases kids need surgery to repair this as they grow the valve does not but thank god in kaydens case with him having the vsd with that it seams to be evening each other out and they dont think kayden will have to have heart surgery.

4. Do you feel like medicine has a correct stance dealing with trisomy 18? If not, how would you change it?

We have been very lucky here in Minnesota they have never treated Kayden any different and have always done what they would have done for any other child. But I do know that is not the case every where or for everyone in alot of places Dr's refuse to even feed kids with trisomy 18 they feel that doing anything for our children is a waste of medical practice.

Years ago everyone felt the same about downs kids{trisomy 21} parents were told to put them in institutions and not to do anything for them they were told these kids would never know them and will never do anything. Today we know this is not true downs kids do a lot and are very smart happy kids. Trisomy 18 has had no real research done since 1960's its sad to me that our kids are treated like the downs use to.

Most Dr's will also talk parents in to a abortion or fancy term inducing the pregnancy convinsing them this is the bast thing and that there kid would never survive the sad thing is they find families like mine later after being told kids dont live long. Here were i live there are 8 other families who have living happy trisomy 18 children all with in 3 hours of each other from age 2 to age 20 years old. Im not saying the road was easy but it was well worth it.

5. You have kept in touch with other families touched by trisomy 18. Is it helpful to stay in touch? What have you learned by staying in touch?

Yes i have kept in touched with many many familes with trisomy 18 children I even went to a soft conference when kayden was 1 years old. Staying in touch with the familes i do is so great becuase only they truly no what im feeling and going through we are each other support system and are there for each other no mater what.

In most cases when one of the trisomy 18 kids are in the hospital or somthing is really wrong we all take turns going to the hospital for support and calling. these families know and understand more then any of my family or friends could ever. They are truly the only ones ever who are really there for us.

6. Have you been in contact with families that have lost children?

Yes at first i thought it would be very difficult to talk with those parents not for the fear of kayden dying but in the fear of making them sad and upset that my son was still alive. My first real accouter was just before kayden turned 1 years old a Young mom like my self got a hold of me through kaydens web page she lived only 2 hours away and had just recently given birth to a little boy named Cole who was born stillborn.

Her husband and her came and got a hotel room near us so they could come meet kayden i was so nervous but WOW Jasmine was so strong and loving she fell in love with kayden and to this day we still get together and do things with each others families and we talk on the phone all the time she looks at kayden as a smack in the dr's and her families faces as they all wanted her to abort cole and she could not do that so even though cole did not make it she looks at kayden as this is why I did not induce becuase this could have been my child.

In our group of families that meet there are a handful of families that come to that have lost there child. Most recently we lost a wonderful little boy name Amos he was 2 years old. But when he was 4 months old he got sick and the hospital where they lived in Nebraska refused to admit him so Kelly the mom drove 3 hours away to Iowa there they admitted him but forced her to sign a DNR.

She found one of the other moms here in MN website who then gave me her contact info when i called Kelly her son Amos was on almost 4 days of no fluids not even through IV they were slowly killing him. With a few nagging phone calls to my one of kaydens Dr's at childrens and convinsing him that kids come from all over to be treated here and even though this was another state it was only about 7 hours aways 3 days later they had him airlifted here to MN were Amos got the help he needed and did very well was such a smiley and very aware little boy but almost 2 months ago Amos got sick and it took the best of him and he passed away 1 week from his 2 birthday.

I was there with Kelly as soon as i knew what was happening it was the hardest thing to go through i was feeling so guilty at that moment for having a son who was older and for giving her hope that her son too could live a long life and at that moment she looked at me and said Marta god is allowing kayden to live longer so you can continue to help families like mine that are not getting the help then she said if it was not for you I would have not gotten the 2 years with him that i did. That just broke my heart. Today almost 2 months later we still talk about every 3 days.

7. What advice can you give to all the people who are exposed to trisomy 18 for the first time?
Don't beleave everything your told. Dr's dont know everything please research and pray and talk to other families before making those big decisions. We were told kayden would not live and if for some reason he did survive the first year they had never heard of them living passed 3 or 4 and that he would basically be a vegetable and would not know us. Today kayden is so not like they told us im glad i listened to my gut and not the Dr's. I dont blame them as they just are not educated enough on trisomy 18 all the medical books are about a paragraph long and everything reads death. So that is my goal to change how things are dealt with I beleave our children should be treated as they would treat any other child and if familes want to have somthing done they should be able to and if not that's their choice too. I guess what i want people to know is that trisomy 18 does not always have to mean immediate death and sadness. We have had wonderful times with kayden and i know that things could one day change but i have those wonderful memories. For those of you who have trisomy 18 children still living I want you to know that because they are fragile does not mean they have to stay couped up we have never treated kayden any different kayden has been to disney world and 2 times to disney land he goes on rides and loves them he has been down water slides on my lap kayden has his own kids ride on hot wheel that comes with a parent remotecontrol that he rides in. My point is i have found that they love stimulation and the more you do with them the more they learn and show interaction. I think kayden does as much as he does becuase of all we have done with him. This year we made a sensory room for him and this month we are finishing up a handicap accessable swingset with ramp and toys down low for him to enjoy so he can play too. You will find you have to become creative. God bless and good luck to you all.

My favorite saying is "Life should not me measured by how many breaths we take but by how many moments that take our breath away. "

BatPolitik: Interview With Christa

A lot of you might be wondering if the views expressed on this blog reflect the politics and views of the bosses: Bat and Christa. Give this a listen and find out how BNS is doing. When you've seen the effects of Stalin and Hitler firsthand, BNS figures you've got something to say. And something that should be heard.

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Email Interview With...Danny Batiansila!

BNS had a chance to talk to Danny Batiansila. Uncle Walter's son. You probably have never had a chance to hear much from or about him, so let's see what we can find out!

1. wis bats have about 1000 great stories of our dad, and i'm sure you do, too. i know it's mean to do, but gimme two or three of the best ones.
A: 1. Stories of your dad? I have to say the ones of them growing up with nothing but still managing to figure out stuff to do to amuse themselves out of nothing. Also, the time when your Dad was building his 1st crib with my Dad's help was a nice laugh.

2. who's the hottie on your facebook?
A: 2. As mentioned, the hottie on my facebook is my girlfriend Lyudmila Trost.

3. what was it like at your school when you beat michigan?
A: 3. What was my school like when i beat michigan? pretty much a 14,000 student mosh pit. It was incredible and the school moral was soaring. Better tune in end of August when we play LSU!

4. did you or do you play sports? what are you good at athletically?
A: 4. I don't really play sports, i did in Louisiana (flag football). Now up here and in college i've been focusing more on academics and trying to get involved in clubs and internships, but i still workout with friends

5. are you a christian? i know your facebook says your jewish but i'm just asking to find out what that means. gotta understand, the wi bats all want to know. we're nosey like this.
A: 5. I am Jewish, one of the clubs I belong to is Hillel (jewish student organization on campus) and my girlfriend is the president and i'm the ambassador for the school.

6. ru ever going to come up to visit wi bats? your uncle just turned 76 and they are having their 50th wedding anniversary this summer. what do ya think? road trip?
A: 6. This summer will be difficult because since i'm a rising junior, i want to get a job that doesn't involve making sandwiches for others. So an internship is long overdue and I think i've found a pretty good one helping out part time at a nursing home. Also, Brandon is coming up sometime and we have to figure out when they're coming, and going on a cruise later at the end of summer.

7. can you sing? do you sing? can you play any instruments?
A: 7. can i sing? of course i can sing, you didn't ask how well i can sing though. I was in the school choir in 3rd grade but since then i've just sang in the car when a cool song comes on and goof off with friends.

8. are you left or right handed?
A: 8. i am right handed

9. who would you get to play you in the movie about your life?
A: 9. even though he's really old, i really like jack nicholson.

10. what spice or seasoning could you not live without?
A: 10. hmmmm i really like pepper

11. favorite three movies ever?
A: 11. matrix(any of the 3), saw (any of the 4), 1408

12. how close are you to lauren?
A: 12. I'm very close to lauren, we're best friends

13. can you do any really good impressions?
A: 13. i don't really try for impressions but i'm good at making people laugh

14. what book would you recommend to anyone?
A: 14. angels and demons by dan brown

15. complete this sentence: you never know why you're alive until you know who or what you'd die for. i would die for...........
A: 15. you never know why you're alive until you know who or what you'd die for. i would die for the safety of the ones i love

Interview With Selah - The Diabetes Scoop

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Focus On ....BERNAY!

BNS had a chance to interview Renee, the fourth Bat.

What’s the fastest you’ve ever driven in a car? When was it?

I think I hit 80-something the other day when I passed the slow-poke in front of me on my way to Merrill - late for a wrestling meet. He decided to speed up as I was passing him - I had no choice. It was not fun. The fastest I've driven while having a good time would have been

read more....click here!

Up Close & Personal With....Phil!

Phil is Heidi's husband, father of two, and a fellow on the Batiansila Leadership Council. Phil drove into our lives almost 30 years ago with a full head of leading-man hair and a real mean machine, his Cutlass Salon. Phil turned approximately 48 on December 21st.

Greg was 12 at the time and was taken aback by Phil's coolness (Heidi, Greg's frigid and controlling older sister, had turned into fawning Silly Putty at the sound of his voice) his feats of strength (lifting all the weights Grandpa Du had out on the carport and ASKING IF WE HAD MORE) and his goodness. He took Greg to see a movie and BOUGHT A LARGE POPCORN. This is a feat unparalleled in Greg's childhood.

BNS finally had a chance to pin Phil down for an email interview.

2.Tell everyone how you met Bruce Springsteen!

Bruce and I go way back-saw him in concert in 1981 at the brand new Rosemont Horizon in Chicago - 11th row. (to read more, click here)

Email Interview With Keaton!

I had a chance to talk to Deirdre's oldest, Keaton, who attends Hillsdale College. Please read this one.

"...I've got to be a man before I would even know where to start with a
woman. I'm not that grown up yet, and I'm not interested in dating
casually "for fun."

Click here for more

Open Call For Uncle Walter Stories

I reached out to Uncle Walter, asking for some time to interview him for the blog. He responded, "Sounds interesting, although I have no remote idea why anyone would want o hear me expound on anything..."

So, I'm asking all three of you readers to toss out an Uncle Walter story, so we can give him a warm welcome here. That would mean you'd either a) email it to me or b) comment -an art mastered so far by only Renee. Then again, maybe she's the only person reading this.

My Uncle Walter story...of many. I was going home with him to Slidell to spend the night or so with Brandon. Everyone was asleep but Uncle Walter and Aunt Pat in the front. We started talking, and he began to ask what I wanted for breakfast, admitting he knew nothing about cooking. He spent the entire trip to Slidell asking me about how to make pancakes - from how to crack eggs to what was to go into it - with Aunt Pat intermittently cautioning him and cackling.

It wasn't until the next day that I realized he actually knew how to cook, and that I wasn't going to have to fish eggshells out of the batter.

Another was when Renee or someone was doing a puzzle and he offered to help. He took pieces that didn't fit, and tried jamming them into the existing puzzle. then he took a glass and used it to shove pieces that didn't belong together. After some minutes of getting everyone riled up, he was done helping....

I'm sure you have more and better....

CUZ CHAT Part II: Drew

Drew and McKenna at Grandpa Du's Birthday Party Photo Booth

Teia had a chance to instant message (that's "msg" in instant chat talk) (by the way, "idk" means "i don't know") with Drew Whithead, Renee's Oldest. Renee is the fourth Batiansila and is married to Jim. They live in Wausau, Wisconsin.

drew: theyre pretty much two of the coolest people in my life

teia: are you being sarcastic?

drew: no im serious

who's Drew talking about? Click here to find out.

TARI SCOOP!

Tari is 7th of the Bat clan. She's married and lives in Mount Prospect with her husband, Aaron, and their 3 kids, Cooper, McKenna, and Brette. I had a chance to talk to her recently via email...

1. How's the baby?

The baby is getting big. She found her feet and likes to stick her toes in her mouth a lot. She is a pretty happy baby...I think it might be that she is sleeping longer at night these days. She is talking a lot too.

2. Did you wrestle with naming her?

We didn't really have a hard time picking her name out. Once we (Aaron and I) both (to read more, click here)

I Actually Edited Out My Laughing

Here's Bat talking about some antics that only a lifelong pastor could tell. I did only minor editing once I realized how horrendously loud I was laughing.

HAPPY BIRTHDAY PIERA!

It's Piera Christiansen's (Deirdre's second oldest kid) 19th Birthday! Happy Birthday Piera!

You can read more about Piera in the chat interview conducted with her by Teia (seen at the right in the picture).

Cuz Chat: Teia Chats With Piera

Teia took this picture of Piera a while back...

Teia: are you liking school and the area you're in?
Piera: yes! i'm having a great time so far. there's a lot to do and sometimes i think i spread myself a little thin, but overall it's wonderful i'm majoring in secondary education, with a concentration in english, and so far i'm pretty sure that's what i want to do.

...Teia conducted an interview with her cousin, Piera, who just started attending school this fall. Click here to read the whole chat!