Friday, December 16, 2011

My Wish For You


As the holidays approach, I am reminded of our blessings and how our amazing journey began, and continues as our child born with a “half a heart” has more heart than I could have ever imagined. I came across this fitting poem to share with other heart families who have also faced this journey.  I wish you all the very best this holiday; love, peace, strength and happiness. See in the next year.  Julie


CONGENITAL HEART DEFECT

Somewhere....someplace...today....
A family is waiting to hear.....
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace...today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought...this cannot be...
I too...know just how this feels..
This happened to ME...


Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room..
And mom and dad are scared...


Somewhere...someplace..today...
The tiniest hearts are repaired.


Somewhere...someplace...today...
A child's growing fast...
Smiling, laughing, thriving...
Her mom thinks...can this last?
It's almost easy...to forget
That anything is wrong...


Somewhere...someplace...today...
Her child seems so strong.


Somewhere...someplace...today...
A little girl fights...just to live...
A father holds her tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that she might die...


Somewhere...someplace...today...
A family says goodbye...


Somewhere...someplace...each year...
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Stop...remember...reflect...
My life has been forever changed by a heart defect.

-Author Unknown

Friday, December 9, 2011

An Overview of Children’s Hospital of Wisconsin, Herma Heart Center


 The Hospital with the Best Published Survival Rates for
Hypoplastic Left Heart Syndrome Worldwide

       The following information is available from the Children’s Hospital of Wisconsin Website 

Hypoplastic left heart syndrome is one of the most complex congenital heart defects. Less than 20 years ago, most infants born with this defect died. Today, repairing this defect and other complex single ventricle lesions accounts for a large part of the work we do.

At the Herma Heart Center, each era had significant advancements in preoperative, surgical and postoperative management techniques that are reflected in the improving outcomes, with survival rates over 90 percent since 2000.

The Herma Heart Center has the best published survival rates worldwide for treating hypoplastic left heart syndrome (see Tweddell JS. Hoffman GM. Mussatto KA. Fedderly RT. Berger S. Jaquiss RD. Ghanayem NS. Frisbee SJ. Litwin SB. Improved survival of patients undergoing palliation of hypoplastic left heart syndrome: lessons learned from 115 consecutive patients. [Journal Article. Research Support, Non-U.S. Gov't] Circulation. 106(12 Suppl 1):I82-9, 2002 Sep 24). The center has set national benchmarks for surgical outcomes of the Norwood procedure, the first of three operations to treat this defect, and has been a pioneer in development of monitoring tools that have become standard practice throughout the world.


What we're doing to provide the best care:
  • We have the only cardiothoracic surgeons in the state of Wisconsin with American Board of Thoracic Surgery Certificates in Congenital Heart Surgery.
  • We continue to investigate and develop better perioperative techniques to improve safe recovery for children with hypoplastic left heart syndrome, including drugs that minimize the effects of heart-lung bypass and novel non-invasive tools to measure how blood is flowing to the body as a gauge of heart recovery.
  • Through the Fetal Concerns Center of Wisconsin, we can diagnose many birth defects and other health concerns in unborn babies and offer counseling and coordinated medical care for mother and baby. This allows families and staff time to anticipate needs and plan care, which improves the care provided at birth.
  • The Froedtert & Medical College Birth Center is located inside Children's Hospital to reduce the time it takes to get a fragile newborn into surgery. Research shows outcomes improve when the delivery room and operating room are close together. This also offers families the added convenience of having mother and baby hospitalized near one another.
  • We established an access and feedback work team to make sure patients and referring physicians always have easy access to our facilities and specialists. Our goal is to communicate with and transfer care back to the patient's community physician for seamless follow-up and long-term care.
  • We have a highly specialized Children's Transport Team available 24 hours a day to stabilize and transport seriously sick and injured infants and children to our center. More than 1,500 transports are provided each year. 
  • We continue to investigate new techniques to improve our ability to stabilize and recover infants with hypoplastic left heart syndrome, including the use of novel perioperative monitoring techniques and special medical therapies.
  • We initiated a home monitoring program in 2000 that dramatically improved infant survival rates after patients were discharged home following hypoplastic left heart surgery. We train parents to measure fluid intake, weight gain or loss and oxygen levels daily. Clear guidelines allow parents to provide objective data to clinical staff, which lead to earlier interventions if problems arise.
  • We offer a special developmental follow-up clinic for children with serious heart conditions to identify any problems as early as possible and provide support as necessary.
Patients/Families - If your child is being treated for a heart defect:
  • Be an advocate for your child. Participate in daily bedside clinical discussions, provide any information about your child that may be helpful to staff.
  • Follow medical instructions fully and carefully before and after surgery.
  • Ask questions if you don't understand the plan of care or if you are not sure how to care for your child at home.
  • Attend any and all follow-up appointments. 
    Referring physicians:
  • Fill out and fax a referral form prior to sending the patient to Children's Hospital for outpatient ancillary services or a specialty clinic visit. 
  • Forward any pertinent patient documentation, including test results, to the specialty physician's office prior to the patient's visit. 
If you have questions about this data or information, e-mail us or call (414) 266-6556.