The Faces of CHD Part Ten: NATHAN

Nathan's mom, Michelle, knew that the baby she was carrying had a heart problem.  She just didn't know what kind yet.  As she waited for the week to go by until her next OB appointment, when she would find out just what was wrong with her little guy, she went into labor and had Nathan at 29 weeks.  It was December 19th, 2008, and it was the middle of a blizzard.  Mayo One, the lifeflight helicopter used to transport patients, was grounded.  In the ambulance on the way from one hospital to the children's hospital at St. Mary's in Rochester, MN, her pediatrician and OB (who were along for the ride) told her that Nathan had Hypoplastic Left Heart Syndrome-that his left ventricle was pretty much non-existant.  The family was told that he would need surgery as soon as he hit 5 pounds, and that was if they chose to try to save him.  Otherwise, they could do hospice care and wait for him to slip away.
Michelle, of course, knew she had to do whatever it took to give her beautiful boy the best chance she could.

On March 13, 2008, Nathan was not quite 5 pounds but he needed to have surgery.  He had the first of his three planned surgeries that day and did well.  (Read about the three-stage surgery used for children with HLHS here ).  In July of the same year, Nathan was once again a very sick little boy.  His kidneys and liver were not doing so well, and it was found that his shunt had closed.  Since he was so tiny and so fragile, a catheter procedure couldn't be done to put in a new shunt, and Nathan had to undergo another open heart surgery to replace the closed shunt.

At the end of October of 2009, Nathan went in to have his second stage surgery, the Glenn.  He did very well, and was at home within 2 weeks.  After being home for a week, it was discovered that he had a chylothorax, a leak in his lymphatic system that was going into his pleural cavity.  (Chylothorax info in detail), so he spent another two weeks inpatient.  Nathan was the star of the cardiac ward during those two weeks.  In spite of his chest drainage tube, he was having a good old time with wagon rides and playing with all the staff.

In late November of 2011, Nathan went to St. Mary's for what was to be the last of his planned surgeries, the Fontan.  While he flew through the surgery itself, the next four days were not so great.  His body was so traumatized and tired that he needed to be placed on ECMO to get some rest.  Just as he was getting hooked up to ECMO, he coded for four minutes.  They were able to bring him back, and in the next three days, Nathan went back to the OR four times to have more heart surgeries.  At some point during all the calamity, he developed a large blood clot in his leg, and the family was told that when he was recovered from his heart surgery, a part of his leg/foot would need to be amputated.
After coming off of ECMO, Nathan's kidneys didn't want to function, so he was placed on dialysis.
Late in the evening of January 9th, 2012, Nathan's pressures dropped considerably and he took a turn for the worse.  It was found that he had grave intestinal bleeding, and it was inoperable due to complications with dialysis and kidney function.  Rather than prolong his suffering, the family chose to let Nathan go.

Nathan and family w/Santa 2011

Nathan & Mama just days before he went to Heaven

He passed away peacefully in his mom's arms on January 10th, 2012, in the wee hours of the morning.
Today Nathan has been gone for a month.  His family does their best to get through, and they know that Heaven is a beautiful place.  But it doesn't change the fact that he is not here on Earth with his family.
CHDs are monsters.  They affect not only a heart, but a body's whole operating system.  They are so much more than "just" a heart problem.  Hopefully hearing Nathan's story (and all the others featured on this blog) will help people to understand just how much is needed for research and funding.  We need to fight these monsters.
Today, please take a moment to pray for Nathan and his family.  And then, do something that benefits CHD awareness.  For all the children in pain, for their families, for the kids gone too soon. 
For Nathan.

Rest in peace, sweet boy.