Some clear facts.

Following the advice of my husband...... I decided to include "clear cut" information.
So here it is !
Hoping this will help more and more parents/babies. I will try to collect a wealth of information. "Clear facts"

I am writing this with a smile.I am so thankful for Will , my husband. He has been and is a true hero . How about this ?? I guess this will balance our wonderful new rational approach ! :0)


BOOKMARK ARTICLE
One-stage midline unifocalization and complete repair in infancy versus multiple-stage unifocalization followed by repair for complex heart disease with major aortopulmonary collaterals☆☆☆★★★

Christo I. Tchervenkov, MDa, Gary Salasidis, MDa, Renzo Cecere, MDa, Marie J. Béland, MDb, Luc Jutras, MDb, Marc Paquet, MDb, Anthony R.C. Dobell, MDb

Received 7 May 1997; received in revised form 12 June 1997 and 7 July 1997; accepted 9 July 1997.
Abstract

Background: Patients with pulmonary atresia, ventricular septal defect, and major aortopulmonary collateral arteries have traditionally required multiple unifocalization staging operations before undergoing complete repair. Recently, the feasibility of a single-stage unifocalization and repair was demonstrated by Hanley. In this report, we describe our experience with each approach. Methods and Results: Since 1989, 11 of 12 patients with pulmonary atresia, ventricular septal defect, and major aortopulmonary collateral arteries have undergone complete surgical correction. The first seven patients were subjected to staged bilateral unifocalizations, with repair being achieved in six (group I). The last five patients have undergone a single-stage midline unifocalization and repair via a sternotomy (group II). Four of these were infants (2 weeks to 9 months) and one was 13 years old. All patients in group I had tetralogy of Fallot, whereas in group II three patients had tetralogy of Fallot, one patient had double-outlet right ventricle, and one patient had complete atrioventricular canal and transposition. In group I, the median age at the first operation was 43 weeks. Complete repair was performed at a median age of 3.5 years, with a mean number of 3.3 operations required. In group II, only one operation was required to achieve complete repair at a median age of 28 weeks. The postoperative right ventricular/left ventricular pressure ratio was 0.49 in group I and 0.45 in group II. One intraoperative death and one late death occurred in group I and no early or late deaths in group II. Currently, four patients in group I and all five patients in group II are alive and well. Conclusions: Early intervention with both surgical approaches can lead to complete biventricular repair in most patients. Because the single-stage midline unifocalization and repair can achieve a completely repaired heart in infancy with one operation, it is currently our approach of choice.(J Thorac Cardiovasc Surg 1997;114:727-37)

Here is the link to this article http://www.jtcvsonline.org/article/S0022-5223(97)70076-X/abstract

Message from baby James' mother

liljamesmommy · Pass a Note!
Posted 19 hours ago

We also found a miracle in Dr. Hanley at Stanford U in CA thanks to Astrid who already posted here. Our son was sent home to die according to docs in MD, but now there is lots of hope. We have actually moved to CA to have Dr. Hanley fix his heart. You have to check him out. The earlier you get here, the better. We waited 8 months too long and now our son is paying for it. Good luck!!

Doctors seek heart valve that grows with kids

This is exciting and hopeful news !
Here is the link ;

http://articles.sfgate.com/2010-06-01/news/21652328_1_faulty-valves-heart-valve-open-heart-surgeries

matter of fact e-mail without the frills.

My daughter was diagnosed with TOF /PA and mapca's 2 days after she was born.
At 2 months old our East Coast Hospital tried to put a stent in her PA which gave her a cathastrophic stroke . She recovered from this miraculously well . When she was 5 months old they tried to unifocalize her in 2 stages. She ended up on ecmo after the first trial and almost died.
Miraculously she recovered from this as well with no after effects.
At this stage our hospital wanted to do some soul searching and try to find a different plan of action. They were running out of options.
Through a miracle I found out about Surgeon Frank Hanley who is at Stanford Ca.
http://www.lpch.org/findADoctor/search/doc.pl?doc=16523&resultSet=16523
Hanley pioneered the unifocalization . He can fix TOF/PA with or without Mapca's in ONE surgery instead of three. He also can fix Pulmonary atresia in ONE surgery. Thereby avoiding many risky caths and surgeries.
He is the only one who can literally make arteries bigger.
He saved many, many babies including Eliana who is a happy thriving 21 month old now.
Unfortunately many hospitals on the East Coast don't refer babies with TOF /PA to Doc Hanley .
Since Eliana's "adventure" we have been able to send 3 babies to Doc Hanley. Two of them were send home to die . They all are doing wonderful.
Is is hard , because many times when I speak to parents they don't believe me. But now that we are not alone anymore more and more parents believe me and many babies are being saved.
Please call me if you have any questions . I will do anything within my power to help you.
My number is 301-620-2421. My name is Astrid.

Oct 19 2010

I haven't written for a long time. A lot has happened since.
Eliana is doing great and we were able to save yet another baby. Her names is Alaina how about that !

The day after I decided to stop searching the internet trying to save babies ( it was consuming me and nobody believed me anyway ) 6 month old Alaina and her parents came to our church.

They just had found out she had severe Pulmonary Atresia and were in shock.
Their cardiologist ( same as Eliana's former cardiologist!) told them Alaina needed surgery right away . Within 5 days.
He told them the same as he told us. He foresaw many surgeries and caths. With a lot of luck Alaina's pressures could eventually go down to 50 %.Far from perfect, but better then her current pressures at 100 %.

At first I didn't want to tell Alaina's parents about Eliana's "unfortunate " adventures at the same hospital they were at . I didn't want to frighten them.
But I ended up talking to Alaina's mother anyway and asked if she wanted to know our story.
To make a long story short.
I confirmed Alaina's mothers intuition to find a second opinion . She send Alaina's medical reports to Boston and Stanford.
Boston had the same opinion as their current hospital , but Doc Hanley at Stanford was confident he could save Alaina in just ONE surgery. Which he did just 3 weeks ago !
Alaina's pressures are at 15 % . Better then normal and she won't need anymore surgeries. She will be able to live a completely normal life without limitations !

Getting the hospital to send the medical records was extremely hard. We had almost the same experience where the hospital send all the records except the most crucial ones.

Now that we are with 3 mothers , my hope is that more and more mothers will believe me when I tell them their babies CAN be saved .

Right now we are talking to a mother of a 2 year old who is not doing well . The hospital is running out of options.
I hope she will believe me and I pray Doc Hanley can save her daugther. Pray it's not too late !!

We got in touch through yet another mother in NY who read this blog ! Her son has also TOF/PA and she had never even heard of Doc Hanley. She helps chd parents get in touch with other chd families and tries to help them get in touch with the right doctors. If this baby will be saved by Doc Hanley. More and more people will be aware of Doc Hanley and more and more babies will be saved . The internet is a very powerful tool.The big hospitals still won't refer babies to the best doctors , but the information will be out there !

By the way , 12 hours after the hospital found out Alaina was going to Stanford they called us.
First question ; How is Eliana.
Second question ; Are you still working ? How are your finances ?
Third question ; Do you want to sit around the table .

Eliana helped save first baby !

We are so happy. Eliana helped save the first East Coast baby James.
He was given up by the doctors here , but has a new lease on life now . Thanks to Doc Frank Hanley. Just click this link and read ! http://mercymedical.org/

March 19 2010

Spring is finally here and we have been enjoying it ! :0)
A few days ago I put Eliana for the first time in a swing.....she LOVED it ! She knew how to propel herself. It was like she had always known how to do this.
Tears streamed down my face. The people and tired parents around me must have thought I was half crazy. But you see , this image has helped me to get through last year.
I had "seen" Eliana when she was still inside . I had seen her on a swing with rapture on her face . She had light reddish brown hair , thin and curly. A round face . She was oh so sweet , very wise, independent. and very very tiny .All true . When we thought we were going to loose her I always thought it couldn't be ; she first had to swing !

April 29 she will have her first lung profusion scan in Philadelphia at CHOP. Something we don't look forward to. She will need an IV , she is so much more aware.....
We hope there won't be any scar tissue.
I don't think there will be , since I got a sense in CA that there won't be anymore crisis.
Today though we read our first(east Coast) hospitals last consult paper. It said they foresee stenting. That's not fun to hear....but who do we trust ? Doc Hanley doesn't believe in stenting and he fixed her !!


Also; Michael Ruhlman e-mailed me back !! For me a Huge happening. He wrote the book "Walk on Water" Inside an Elite Pediatric Surgical Unit. www.ruhlman.com He has the same thoughts I do,,,,
This is what he wrote;

I don't know what can be done. it's a horrible situation. everyone who finds themselves in this predicament needs to read the chapter in my book. ( the Good , the Bad and the Good Enough ) call the docs on the error, complain to the hospital. find the medical reporter at your main newspaper.


only real solution is to have 5 big regional centers that only do CHD repair. but it makes so much money, all children's hospitals want to offer it.

I will sign of for now. Eliana still doesn't sleep through the night and I am tired . It's not too bad though . I feed her and she goes right back to sleep . I am amazed how I can function. In the past I would have been a wrack :0)



PS; One weird thing happened last Monday after a funeral I played. I had let the thought of suing go and put it out of my hands into the ones from above.......
Well; I ended up going to the lunch afterwards.....sitting next to a man who happened to be a big time DC lawyer who told me the name of his very good friend who is the "best malpractice lawyer in the country " living 20 minutes South of Frederick....... I am NOT a person to sue.... I guess I will call this particular lawyer , hear his view and THEN let it go !!!!! :0) The only thing what I keep thinking is ; if nobody stands up , nothing will ever happen.

Einstein

Excerpts out of Diary

Wednesday June 4 2008 8 weeks and 2 days.

Laughed so hard , just a minute ago.
Will said while putting his arms up in the air while making the movements of an eagle : "It's exiting , having our own baby ....it's like getting the ultimate pet !"

Saturday June 28 2008 11 weeks and 3 days

Sad. Einstein comforted me ; one tiny little white paw on my arm.
I realize you only will get to know Will's parents.
Not my "mummy and daddy". You must know how much I love them. So much that it hurts.
Wonder if you ever will have similar thoughts and feelings...
I love you already without seeing you , without rhyme or reason.

Today March 8 2010



You are sleeping. After a day in the sun. It was so wonderful.
Will and I are still in shell shock. Last year I was giving you these awful Lovenox shots. Twice a day in your thighs . I had to put ice around my heart otherwise I couldn't do it. The needles were really big and thick and your cry made my heart break. Today I petted and combed that sweet little white pawed diabetic Einstein...all these shots for so many years helped me to be able to give you these crazy Lovenox shots! I wonder if he knew.

Angel bag Lady and kaleidoscope

Excerpt out of my diary May 30 2008 7 weeks and 4 days It feels like a feather.......a feather tickling the soles of my feet.
That is how it feels , having you inside me.
So relaxed . All the time. Except 2 nights ago of course.
The night after we found out you were a miracle.
Still in there.
After that big bleeding we were in twilight zone.
Not daring to hope . Thinking of all the reasons it would be better not to be pregnant after all...
Us ; two musicians.....your father and I. Rich with each other, our Eden/Paradise , but not according to our immediate world.
How will we be able to take care of you ?

That night was full of anguish for me. Then I prayed to patiently wait upon God... and see !?.....I feel peaceful and calm again.

I asked my mother and sister about being pregnant , but they have forgotten a lot of details,so.....here it is ! :0)
You will be able to read this when you are grown up. And know that your mother is a just a human being , just like you ! Thirty eight years "old" , but I still feel like I am twenty .
This New Year ( I mean last New Years day ) started with a meteorite.
I saw it driving back from Laidily . Flashing through the sky. It had a beautiful long white tail.
It is recorded on the Internet with my name beside. Maybe you can still track it down! ? It felt like a sign.
I didn't know what for , but I knew this year was going to be special.
And now you came into being . I waited so long !:0)

Once I met a bag lady , she held my hand a touch longer then normal. It was after a concert at the "Shrine of the Immaculate Conception" in Washington DC.
The day before I got lost in South East ( after the rehearsal )
I was nervous , since I had to find the way back again.
She had very light blue eyes -she didn't look unkept at all-had snow white hair and had exactly my accent. ( Dutch )
Her name was Doris. I asked her if she was sure she wasn't Dutch after all...?!?!
"No", she said with a smile. We just talked normally. Nothing out of the extra ordinary ; she too had studied at Indiana University and told me it would be good to teach harp to young children. After she had held my hand a little longer then normal while saying it was such an honor to meet me, a peace settled down on me.
A peace so serene and profound , it didn't leave me for three days .
After I had loaded the harp and I turned to say goodbye to her , she had completely vanished.
She was nowhere to be seen ......
If you know the Shrine , you will know you just can't vanish in this wide and open space surrounding the front with the steps !
The peace stayed . A car came with people who were willing to drive in front of me to show me the way home. Home to Will . He noticed something had happened.
I didn't wash my hands for three days ....
After three days the calm feeling lifted and I have never felt it since.
But the memory warms my heart. Later I found out that "Doris" means Gift.

WHY THIS STORY ? You must think .
Do you believe in angels ?
I will continue telling the story , because it didn't end there .
The first ultra sound after the "miscarriage" , was done by a very sweet compassionate lady. She was so positive !?
Telling us more or less she wasn't sure it was definitely over.
She showed- and now don't laugh :0)- the sac and yolk....YOU . She told us it was too early to know if it was a blighted ovum or not.
Very happily she said; "Hopefully I will see you in three weeks or so"
When I asked her what her name was , she answered " Doris" The same name as the "Angel bag lady"
At that time I knew ,but hardly dared to hope. Still I questioned. I saw the possibility...God telling me about his gift ; YOU !

Feb. 28 2010

And look at us now . How little did we know ...!
Looking back it seems we were being prepared. Prepared for all that was-and maybe still is- to come.
Living right now feels like being in a kaleidoscope , or at least looking through one. That's good ! Looking through one you can start seeing the beauty of the chaos inside .

The one thing I have to say today is THIS ! :0)
I think Eliana's prayer is starting to work !
I got an e-mail from a mother whose 6 month old son has the same thing Eliana has .....
The doctors at the hospital she was going to (in MD ), didn't know what to do anymore . Now she is sending all her son's data to Surgeon Hanley in CA !
I am so excited !
Every night I check the chd message boards for cries of help . This is how I got in contact with her .
I haven't heard from donoharmdoc , nor Doc Mee . That doesn't matter . I will keep plugging on !

This is part of a mass e-mail I wrote before starting this blog

Today I decided I will start a blog . ( after seeing Julia and Julie -very nice movie ) I want to save as many babies possible. I know my voice is small. That's why I already spoke to the secretary of Doc Bagnato from the PBS Documentary "donoharmdoc " http://www.donoharmdoc.com/
She was very interested .We talked for over 20 minutes.....We'll see if he will call back... Think of this. There are over 1200 babies like Eliana born in the USA . Our insurance company lost already roughly 2 million dollars in botched surgeries and unnecessary procedures which almost killed Eliana...I know most hospitals and insurance companies are not lovey dovey , but 1200 times 2 million........... might make the insurance companies want to take some form of action.. And this is only ONE form of chd.
If we make a page with all expert doctors .....and affiliate this with the movement of "donoharmdoc".........Lives CAN be saved ! If "donoharmdoc" can contact insurance companies.....They might listen.
I am no doctor , nor an accountant . My English isn't perfect . My voice small ...who knows...maybe Doc Bagnato is willing to make it a little bigger.
I also contacted the Cleveland Clinic where Doc Mee used to perform surgeries. The book " Walk on Water: Inside an Elite Pediatric Surgical Unit" was written about him They will forward my e-mail address to him.....He was just as frustrated. He pioneered the life saving surgery for babies born with Disposition of the Great Arteries....A hospital 10 minutes across the state line never send "their" babies to him....with disastrous aftermath.

I will keep on trying to save lives , I have my whole life . Even if Doc Bagnato or Doc Mee won't get back to me , I will keep trying to speak up for all these babies and their parents.

Saving babies like Eliana

How do I start this journey I am about to make ?
After all that has happened last year ? So much happened that nobody would believe it.
It all started with a prayer. "God ,can you please tell me the name of this baby I am carrying inside ?" My husband and I were expecting our first baby after a painful miscarriage . We had chosen a name for the angel we lost , but couldn't agree on this one.....
Well ; we got an answer and quick ! E-L-I-A-N-A
That's how it was spelled out for me , complete with the dashes.
I am Dutch , so I didn't even know if this actually WAS a name , nor the meaning of it......
When I did some research on the Internet I just about fell of my chair .
It WAS an existing name and it's meaning is;
Eli = my God and Ana = has answered me.
My God has answered me !
And answering my prayers ( and countless prayers of others ) he DID !

In her 13 months of life He helped Eliana survive a catastrophic stroke during a cath procedure and an open heart surgery gone wrong ( she was put on ECMO )
After all of this He led us to the right surgeon , Frank Hanley and a way to get to him half across the country.
We just came back and Eliana is crawling through the house like there is no tomorrow ! :0)

My prayer right now is that He will use this blog to help save babies like Eliana.
If Eliana had been send to the right surgeon from the beginning non of these near fatal scenario's would have happened .......but then I wouldn't be alive. That's a whole other story I will tell you about another time.
You never know why things happen when they happen . Sometimes when you look back you will begin to see , understand.
There are so many things to say and explain. I hardly know where to start.
If you follow this blog , everything will become clear .