Natalie Grace Clark

May 23, 2008 to June 6, 2008

The following is the story of Natalie Grace who we lost too early in her short life on Earth.  Her name means a lot to us; Tiff always wanted a daughter with the name Natalie and Brian loved the name Grace, named after his grandmother.  We called her Natalie Grace, we rarely called her Natalie for short because she was too remarkable to be called by just one beautiful name.

Everything was normal through the pregnancy, ultrasounds were fine, she measured a little small so the due date was pushed from the end of May to the first week of June; but nothing to be concerned about.

During the early hours of May 23rd, Tiff wasn’t feeling well and after a call to the Nurse Line and some convincing, we drove to the Lakeview Hospital in Stillwater.  Natalie Grace was born at 2:52 am, 30 after arriving arriving to the hospital.  The nurses congratulated us and whisked her away.  Apparently she stopped breathing (something I never told Tiff).  The team of doctors and nurses put her on oxygen and paged our pediatrician to come in.

At 5 AM our pediatrician came in and told us that she has a heart defect (diagnosed with a sound of blood flushing in between the left and right atriums). He continued to inform us she may be Down Syndrome (diagnosed by the look of her eyes and feet).  Of course we thought she looked a lot like Nick and didn’t notice any of the indicators the physician was referencing.

Our pediatrician recommended she be taken to Children’s hospital.  They arrived shortly after in their flight suits.  We still aren’t sure to this day if she was taken by ambulance or helicopter.  Below is a photo of Natalie Grace in the isolation chamber for transport.

It was tough for Tiff and I to watch her get taken away from us.  But we didn’t realize how difficult the next few days would get.

I drove home to get some items while Tiff waited for discharge in the hospital.  I drove back to the hospital to pick up Tiff and we drove to Children’s in St. Paul.

We were directed to the NICU where we could be with our daughter.  Tiff and I met with various physicians and nurses telling us what to expect while at Children’s, some of the tests they will run, the diagnoses with her heart and surgical options as well as running a genetics test to confirm or reject Down Syndrome.  It was Friday and the tests would take a few days to complete.

We continued to spend all day Saturday and Sunday at Children’s with Natalie Grace.  The physicians, nurses - all the staff were outstanding.

Monday was Memorial Day, but it was going to be one of the hardest days of our lives.  Our pediatrician at Children’s came in and told us this was not going to be an easy conversation.  She continued to tell us they ran the test on her genetics and didn’t expect what they had found.  Instead of Down Syndrome, she had a much more serious genetic defect called Edward’s Syndrome or Trisomy 18.  She had three #18 chromosomes.  The physician continued to tell us this Syndrome is rare and fatal.  Tiff and I bawled, and held each other in disbelief.

To keep family and friend informed, I set up a CaringBridge website.  We received more than 5,000 visits from friends and family.  Approximately three hundred people signed up for updates to learn about her changing status.

We received lots of information on Trisomy 18, none of the information was encouraging; in fact it was quite grim.  After reading the information, it was quite clear that we were lucky she was even born.  Most Trisomy 18 babies don’t make it to a live birth.  We felt blessed that she was born.  The percentages predicted just how short her life would be: 50% make it to a live birth; 95% born, pass away within the first month; and less than 1% make it to their first birthday.  The Geneticist at Children’s explained to us that this was a mere fluke, and had nothing to do with our genes.  Twelve babies are born each year with this in Minnesota.

Leaving the hospital on Monday was the hardest thing.  The only thing on our mind was the thought of losing our daughter, the unfair life she was given, and her pain and suffering she is enduring; life isn’t fair.

The drive home was difficult - pulling over every few miles off the freeways, highways and county roads to wipe the tears from our eyes.

On Thursday, May 29th we had her baptized at the hospital’s chapel.  Pastor Scott Westphal from Elim Lutheran Church in Scandia (who also baptized Nicholas) came to perform the baptism.  We felt blessed that this could be done for her.

Natalie Grace was in great hands at Children’s, but we wanted her home.  Once her condition stabilized we could bring her home.  Below is a photo of one of our favorite nurses who cared for Natalie Grace.  This day we were able to take her outside into the sun!

On Monday, June 3rd we were able to take her home.  We acquired the necessary feeding tube and automatic feeders, learned how to properly place her feeding tube down her throat and into her stomach using a stethoscope, and the proper use of oxygen, oxygen tubes and cannulas for her little nose.  We administered pain meds to keep her comfortable.