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 .