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Declan’s Smile

Declan's Smile

It was a blessing in October 2008 when my husband and I found out we was expecting our first child.  I enjoyed all the wonderful ultrasounds we got to see of our baby.  It was on the 19th week ultrasound that we found out that our baby boy would have a cleft lip and palate. We were sent to a high risk OB doctor at Vanderbilt University Medical Center. We were followed closely by him as well as our regular OB doctor. I had a normal pregnancy only problem I had was high blood pressure towards the end of my pregnancy. To our surprise Declan arrived 2 weeks early at 38 weeks. When he was born we got to see him for a few seconds before he was carried away to the NICU due to breathing difficulties. We had a stay in the hospital of 2 1/2 weeks due to feeding difficulties and we ended up having to send him for his first surgery just at 1 week old to have a feeding tube placed and this is where our wonderful roller coaster ride began.  He passed his new born hearing screen before we left the hospital which was a relief.  While in hospital we learned from his Geneticist that Declan’s cleft lip and palate is genetic related and something spontaneous because it doesn’t run in mine or my husband’s family. We got to come home for a short 1 month and then he was back in hospital at 3 months old due to difficulty breathing. This was not a short stay and in this stay my son had over 5 surgeries and he ended up with the nissen fundoplication wrap of stomach to stop his severe GERD that was causing his airway to swell and this did not help all the way because they discovered that he had a small air way and a floppy air way. We was told that he would have to have a trach put in place because he would not thrive and survive without it because he could not breath well on his own. We opted for an upper airway surgery to widen his airway in hopes to keep out the trach, but it failed and we ended up with the trach. We are unsure when his trach will come out. We spent 3 months in the hospital with him. He has to undergo 2 sedated upper airway scopes a year to check his airway. His cleft lip and palate surgery was put off due to this long hospital stay and he didn’t get to get his lip repair until he was 6 months old and his palate repair at 1 year old. We are unsure when they will repair his gum line. He had a sedated ABR hearing test at 6 months old and they found out that he has bilateral hearing loss and inner ear damage and he has to wear hearing aids. We have yearly hearing screens done on him to make sure his hearing hasn’t declined any and so far it has stayed the same. He receives early intervention services, speech therapy, occupation therapy, and physical therapy.  He shows great improvements from having these services. His slower than children his age, but shows progress slowly. I am thankful God blessed me with Declan because he has definitely taught me to appreciate the small things in life and that with patience comes progress. I am here to help anyone that may have questions or concerns and feel free to email me @ summer.hudson@comcast.net . I hope Declan’s story can be an inspiration to others.

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Site last updated December 5, 2016 @ 3:07 pm; This content last updated June 3, 2011 @ 3:12 pm