Madeline L.

Condition: Atrial Septal Defect, Downs Syndrome
City, State: Bend, OR
Club: Ensworth Elementary School Sparrow Club Service Hours:
Date Adopted: 3/12/2012

Madeline's Story:
James and Carrie were excited to learn that they were expecting again so when their doctor offered testing for Down’s Syndrome, they said yes. Their feeling was that it is always good to be prepared. After the first test, they were told that their unborn baby had a 1 in 6 chance of having Down’s Syndrome. They decided to undergo further testing and found out that their little girl would indeed be born with Down’s Syndrome.

Doctors informed them that kids with Down’s Syndrome can develop a number of other organ problems while in utero so Carrie underwent extensive monitoring during her pregnancy to keep an eye on the babies growth and development. No other apparent problems were discovered. Down’s syndrome babies also tend to develop issues towards the end of the pregnancy and are often born early. As a result, baby Madeline, or Maddie as her family calls her, was born 4 weeks early at just over 5 pounds.

It wasn’t long before doctors discovered that Maddy has what is called Atrial Septal Defect. The valve in her heart that should have closed when she was born has stayed open and is gaping at 1 cm. This is causing congenital heart disease as well as pulmonary hypertension.

Normally doctors would try to wait until the child is around 3 years of age to perform the surgery to correct this heart problem but Maddie’s is severe enough that doctors have decided she cannot wait. She will be scheduled for open-heart surgery somewhere around the end of March.

Madeline will face other challenges as she goes. Her parents are doing their best to provide as much early intervention for Madeline as they can. She will need to have her eyes and hearing checked regularly to help catch any possible problems before they worsen. She also sees a speech therapist regularly to help with the swallowing and aspirating issues she has. She will be beginning her Early Intervention Assessments as well to help determine where her developmental delays may be.

Sparrow Cash raised for Madeline will help to pay for ongoing medical expenses, travel expenses and the costs of therapy and monitoring.


The Ward Family
The Ward Family The Ward Family