Wednesday, November 18, 2009

Dylan Mitchell

Dylan's Story:

Bare with me, this is my first blog and I am not the greatest. Let's put it this way, I couldn't even figure out how to make a Myspace page - my friend had to do it for me.

I have decided to do this blog so that everyone can keep up with Dylan's progress. Let me start from the beginning:

Mitch and I have been married since January 2004 and after having our first child, Hailey, we decided it would be great to add to our family, so I stopped taking the pill and poof I was suddenly pregnant. My pregnancy progressed normally until I was 29 weeks and the doctor told us that Dylan was behind in his growth and was diagnosed with IUGR (intrauterine growth restriction). This led to more tests and ultrasounds, but everything came back normal - even the MRI!, they told us that they didn't know why he was growing so slowly but they were confident that everything would be fine. Dylan was born on Friday, February 20, 2009 weighing in at 5lbs 13oz. It was an uncomplicated vaginal delivery and immediately after birth he began having trouble breathing and he was taken to the nursery for further evaluation. The Pediatrician told us that he had a hole in his right lung (pneumothorax) and needed to be transferred to another hospital but thought that he would probably come home in a day or two. He was transferred to Sharp Mary Birch in San Diego. Because of this, five hours after I gave birth I was discharged so that we could go to be with the baby. When we got to the NICU the Neonatologist told us that they wanted to run genetic tests because Dylan had some abnormalities and his ears "looked a little funny." Of course this was very hard to hear someone say, I stared down and all I saw was a beautiful baby boy. We then came to find out that he had a cleft palate, heart murmur, hypospadius, undecended testes, sacral dimple, and kidney reflux - gosh I still can't believe that none of this was seen in utero. He told us that a genetic consult was ordered, but she wouldn't come until Monday and the genetic testing would take at least a week to come back (it was a very long week). To make a very long story short, Dylan spent 20 days in the NICU and was diagnosed with a rare genetic condition called Wolf-Hirschhorn Syndrome or 4p deletion. Basically he is missing a tiny segment of his 4p chromosome.  This occurred at conception, when the egg and sperm came together and all the DNA began attaching, this one little piece just didn't hook on like it was supposed to for reasons we will never know.  WHS occurs in about 1 out of every 50,000 - 100,000 births and usually is a completely random occurrence. Mitch and I had our chromosomes tested and found that we were totally "normal", genetically anyways, so this was not passed down - good to know. Well, this has been really tough. I don't think I have cried so much in my life. It was very scary at first, still is at times but we love our "little pickle," he is just as cute and happy as can be. We are blessed to have him in our lives. I will never forget what his Pediatrician said to me when I brought him for his first well baby check up - she said "I don't know why this happened, but I think Dylan is here to teach us unconditional love, enjoy every minute you have with him." I smiled at her and nodded in agreement and tried my best to hold back the tears. When I took him for his 6 month appointment she was astonished to see how well he was doing, she said that "he had already exceeded her expectations." He is doing so well, so much better than we or any of his doctors had anticipated.


  1. Beautiful story & beautiful family. I love you all so much :) xo Auntie Kerri xo

  2. Kristy - if you really are not too good at techy stuff I sure hope that you set up your blog to email your comments so that you get this!!!

    Just wanted to say hi, welcome you to the bloggy world and tell you that we will be following Dylans story. My daughter Norrah has WHS too and you and I are friends on facebook. I also have a blog that includes a list of all the WHS blog kids. I will add sweet Dylan to the list. Blessings.

  3. That is EXACTLY what happened to me, normal pregnancy and all, i was just treated rudely by the hospital

  4. You little man is just the cutest. Our little man JD is due at the end of April 2012 and has been diagnosed with WHS. It all started with the abnormalities found during our 20 week appointment. It has been a very emotional journey but reading about the other extraordinary children have given my husband and I comfort. Thank you for sharing your story and I look forward to following Dylan's amazing journey.


I love to read your comments. If you would like me to reply to your comment click on "subscribe by email" at the bottom of the page.