Featured Child~ Michelle

 

This is the story of Michelle Leigh Dems. Michelle’s story begins on January 19, 2010 with a trip to Hillcrest Hospital. With Michelle being our third child we were well prepared for what the day would bring, and we were excited to hold our daughter for the first time.  However nothing could have prepared us for what was about to happen to our family.  Michelle was born without a cry.  She was struggling to take her first breath.  We immediately knew something was not right.  As the minutes passed more and more hospital staff began working on Michelle.  She was taken from the birthing room and moved to the Neonatal Intensive Care Unit at Hillcrest.

We sat in the recovery room for what seemed like hours in shear panic as the doctors figured out what was wrong with our baby.  We were finally told that Michelle was born with a right sided diaphragmatic hernia and would need to be transported by the critical care team to the Cleveland Clinic.  The doctors explained that during development Michelle’s diaphragm did not fully develop allowing her bowels and liver to enter the right chest cavity which prevented her right lung from forming along with many other complications.  Later we found that 2000 babies every year are born with this malformation and the survival rate is 50%.  As we were waiting for the critical care team to arrive they let me see our daughter in the NICU.  She had wires and tubes attached to every part of her body, she was breathing with a ventilator.  Since my wife delivered by cesarean she could not get out of bed to see our daughter before being transferred to the clinic.  Even though time was of the essence the Cleveland Clinic critical care team wheeled Michelle’s portable transport unit into my wife’s room so she could spend a few minutes with our daughter before being taken to the clinic.  This was very difficult as my wife knew it would be days before she would be with Michelle again.

Not understanding the full magnitude of our daughter’s condition we figured that we were going to the clinic so our daughter could have immediate surgery to repair her insides.  Once meeting with the surgeon he explained that they would need Michelle to stabilize before surgery.  This usually takes several weeks and increases the chances of a successful surgery.  Doctor Rodriguez was assigned as our primary doctor and he explained that we were in for weeks if not months of highs and lows as they tried to save Michelle’s life.  The hospital staff compared what we were about to endure to a roller coaster.  One hour there may be good signs and the next it could look very bleak.

The two weeks that followed were exactly as the NICU staff explained.  One minute Michelle would be resting comfortably and even though she was being kept alive by machines her readings would be stable.  Then out of nowhere her levels would drop, and in would rush the hospital staff to try and stabilize her.  Michelle was so sick she had her own dedicated nurse assigned to her around the clock to monitor her critical levels.  During the first weekend in the Cleveland Clinic NICU what little lung tissue Michelle had on the right side along with her left lung filled with fluid which prompted moving her from a ventilator to an oscillator to breathe for her. We moved into Ronald McDonald house so we could be close to the clinic in case we had to get to Michelle’s bed side quickly.

The fact that Michelle’s organs were not where they were supposed to be made it difficult for the surgeons as they planned her upcoming surgery.  The lowest point of the entire ordeal came when there was a possibility that her liver and heart wall had fused since both organs had developed within the chest cavity.  The only way to know for sure was to have an MRI to determine the location of all the internal organs.  Unfortunately, Michelle was not stable enough for an MRI, and there could be no surgery until the MRI was performed.  It seemed that every time she would be scheduled for the MRI there would be a set back pushing the tests out further.  All we wanted was to get her to surgery so she could start to recover.

The day finally came where Michelle would be moved down to the MRI room.  It took several staff members to move her and all of her machines including the ventilator.  The turning point in Michelle’s short life came when the results from the MRI showed that there were not any major attachments of organs which meant that the chances of a successful surgery were greatly increased.

A little over two week’s after her birth Michelle was stable enough for surgery.  A few hours before surgery we met with all the different individuals who would have a hand in helping our daughter survive during the procedure.  That morning before surgery was the first time we held our daughter.  Still hooked to all the machines she was taken out of her isolate and placed in our arms.  After spending a few minutes with both of us she was taken to surgery.

After 3 ½ hours we were ecstatic to learn that the surgery was a success.  The surgeon was able to get all of the organs back in place and repaired the hole in Michelle’s diaphragm with a gortex patch.  Once the organs were out of the chest cavity it was discovered that there was some lung tissue on the right side.  The relief our family felt is indescribable.  For the first time since Michelle was born we had a real feeling of hope that our daughter would be able to recover from this malformation, and live a successful life.  We were warned that there was still a long road ahead with several possible complications. 

    We were told the next step in Michelle’s recovery would be patience.  She would have to learn to breathe on her own, after being intubated since birth. Learn to eat so she could get strong enough to be released from the clinic.  One of the most remarkable aspects of the time following surgery was how quickly Michelle got strong enough to begin breathing with less and less help.  After surgery she was placed back on the ventilator to help her breathe.  It was only a couple days after surgery that Michelle was upgraded to a CPAP machine which allowed the tube that had been down her throat since birth to come out.  After a short period of time the only assistance in breathing was a canulla with room air.  Even though she was still hooked up to a variety of machines we were able to hold our daughter any time we wanted.  As the weeks went by slowly the wires and machines began to disappear.  The last major hurdle was getting her to eat enough so that she could be released.  It took several weeks but Michelle finally was eating enough to be considered for release.

    On March 2nd exactly 6 weeks to the day of her birth Michelle was released from the Cleveland Clinic, and we were able to take our daughter home for the first time.  Our family will never forget the entire NICU staff that showed such knowledge and compassion while saving our daughter’s life.  We will always remember our new friends at the Clinic as Michelle creates new milestones in her life ahead.

~ Michelle’s Dad