A Broken Heart (4)

Part One: Read the full story part one.

Part Two: Read the full story part two.

Part Three: Read the full story part three.

Part Four: As I write this short article and reflect on this day in Summer 2017 at Epcot Center, Disney World, Florida, it is hard to fathom that such a day could possibly exist in the future when Katie would be full grown. Of course, most parents think of having wonderful vacations with their children and

just spending quality time. We like to think that we have everything under control and that our dreams will be realized. But on the day of Kate’s birth, such thoughts were hard to conceive of . . . not even on my radar. (Of course, God had everything under His control.)

Remembering the day that Kate was born was more like swirling in a tornado going 100 miles per hour which lasted for about 16 hours. It was a planned caesarian section but what happened after the actual birth was nothing at all that we had planned. I felt powerless and had no way to help or protect her. Saving her was beyond my comprehension and I just had to trust in God.

Within one hour of Katie’s birth, doctors and nurses were plugging her up to all sorts of medical machines for heartbeat monitoring, oxygen levels and flows, feeding tubes, medicine tubes, brainwave monitoring and whatever else

they do in intensive care. She was labeled a “non-thriving baby” and it was discovered that her heart was not completely formed with a hole between the bottom two chambers. Her heart condition was called a “common AV valve” which is common to children with Down syndrome.

Before long a transport ambulance arrived with paramedics and doctors, all arranged by the attending heart specialist “who just happened to be there” in the nursery. The transport unit came from Children’s Hospital of Philadelphia. There may be hospitals as good as CHOP, but probably none better.

I spent the first week of Katie's life shuttling back and forth between two hospitals and home. I was able to bring news of Katie's improving condition to Michelle. When Katie was ready to be discharged I went to Chester county hospital to pick up Michelle and then together we went to CHOP to get Katie. 

At CHOP, Katie was put on a short list for a very invasive open heart surgery. The surgery was scheduled to be in March to give her a little more time for a positive outcome. Dr Norwood, a cardiac surgeon, was scheduled to complete the surgery. When I met him I was surprised at how

large his hands were; when we shook hands, mine basically disappeared in his. I was surprised that such a large man could handle a heart the size of a strawberry. But CHOP assured me that he was a world renown surgeon and that babies from all over the world were flown in to have him as their baby’s surgeon.

FACT: 40% of children with Downs have a Common AV Valve requiring surgery. In years past, most babies with this condition did not make it to their first birthday. Fortunately, Dr. Norwood had perfected the surgery years before Kate was born.

MYTH: Parents will not find community support in bringing up their child with Down syndrome.

TRUTH: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. You can find a list of groups at http://www.ndss.org/Resources/Local-Support.

NDSS National Down Syndrome Society:

https://ndss.org/myths-truths#myth-most-children-with-down-syndrome-are-born-to-older-parents

Michelle White is a public speaker and enjoys visiting parishes, schools, and small groups to give her testimony about life with children who has disabilities. Contact her at 610-468-7112

Kate & Dad

$20.00

“Kate and Dad” is a black & white print done when Katie was three years old. The image contains all the joy possible with a toddler and her father. Size is suitable for framing in standard frames. Product DOES NOT INCLUDE MAT OR FRAME. Purchase mat separately. Reasonably priced with free shipping to continental USA.

Print comes in one size 5” x 7”. $20