Savana

Mom to Michael Leonard Williams Jr. 

March 4, 2011 – August 1, 2011

Center Township, PA

During my pregnancy we found out our son would be born with a single ventricle heart. August 17, 2010, was the day that my life would change forever. The scariest thing a mother can hear is that her baby isn’t perfectly healthy. In my son’s case this was an understatement. He was born Michael Leonard Williams Jr. on March 4, 2011 at 9:33. He was the most perfect little boy I’ve ever seen. As it is for all mothers, it was undying, unbiased love at first sight. He was just the most amazing little miracle a mommy could ask for.

Although we knew that my son would have to have multiple open heart surgeries, we were hopeful and “prepared” as we could be. Michael had his first open heart surgery at one week old. He didn’t end up doing so well with it and had to be but on the heart- and lung-bypass machine, ECMO, about eight hours after his surgery. The ECMO saved his life but caused a complete heart block and a pacemaker had to be inserted. Pretty much from the moment he was born, he dealt with struggle after struggle. He developed a chylothorax, meningitis, and multiple blood stream infections. He was born with one kidney, a sub-mucus cleft palate, was deaf in one ear, had a sacral dimple, and of course the big one: the right side of his heart was extremely underdeveloped. He had an ASD, large VSD, aortic atresia and it seemed like every other day they found something new. At one point my son was doing very well and spent an entire month in the step down unit. This was the happiest time of my life and although sleep was few and far between I would have lived that way for the rest of my life if it meant that I could have my baby back.

Unfortunately after his month of doing well he was up and down for the rest of his life. What I hadn’t mentioned before was all of his genetic tests came back normal but the doctors couldn’t wrap their heads around all that was wrong with him. He was eventually diagnosed with a very rare genetic disorder called “Kabuki Syndrome”. This explained all of his infections, because a part of the syndrome is a compromised immune system. Michael’s last good days were very good days; he was happy as a clam and started to hold his head up, and was talking up a storm. He ended up contracting RSV and phenomena which caused severe lung disease; his organs were no longer functioning properly and it was only a matter of time before dialysis.  They had my son sedated, paralyzed and on hypnotics for 30 days and there was no improvement. The doctors did a few last tests to confirm that there was nothing else they could do. My son lost his precious little life on August 1, 2011 at 9:53. He is now flying with the angels. 

You can reach Savana at savanagrimm@gmail.com.

 

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Comments

  1. Allison says:

    Savana,
    I am sorry sorry for your loss. Michael sounded like a fighter! Although he struggled most of his life, I am glad that you were able to have that time with him. I lost my son 11 weeks ago. He lived only 2 days. Somehow he suffered a hemorrhage due to a placenta abruption. I hope that you are doing well and that you have found some peace through your horrible experience.
    Blessings,
    Allison

  2. Megan Kae says:

    I am so sorry for your lost! I share a birthday with your son :) I will be thinking about him. Prayers to you and your family. I also have a daughter who passed at 15 months old her 2nd bday is this march 10! Keep your head up!

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