Organized by: Angelina Howard
HAPPY BIRTHDAY JOSIAH!
April 10, 2016
What we thought was a routine ultrasound to ensure Josiah was growing properly in the womb, turned to an unexpected delivery. Upon completion of a 37-week ultrasound the doctor told us for whatever reason Josiah is not growing in the womb, he was measuring 4lbs. The doctor told us we need to stay at the hospital and Angelina needs to be induced. The following day Angelina was induced and our little boy was born with a weak cry weighing 3lb 15oz. After much blood work, we were unable to form a diagnosis to justify his low weight, so after 9 days in the hospital we were discharged home. It was not until Josiah was 5 months old we realized that he has heart defects, he was refusing to eat most of his meals, and his weight gain has plateaued. We realized he was not developing right and not reaching his milestones. We decided that the best option was to admit him to All Children’s Hospital of St. Petersburg, FL to have a team evaluate him for an explanation of everything. It was there that Josiah received a percutaneous endoscopic gastrostomy (PEG) tube placed, which allows nutrition to go directly to his stomach, thus bypassing his mouth and esophagus. We also learned that the two heart defects (atrial septal defect (ASD), bicuspid aortic valve), his horseshoe kidney, poor nutritional intake, decreased growth, excessive projectile vomiting, poor muscle tone, and distinct facial features consummated a diagnosis, know as Wolf-Hirschhorn Syndrome.
Wolf-Hirschhorn Syndrome (WHS) is caused by a distal deletion of the short arm of the 4th chromosome. Often times, WHS is loosely referred to as 4P-(4th chromosome, petit arm, missing). This syndrome is very rare and estimated to be 1 in 50,000 live births within the United States. This rarity results in a lack of information, resources, and treatment options. Phenotype (characteristics) of WHS include: • Slow growth involving developmental delays (physical/mental retardation) • Cranial/facial distinctions • Closure defects including cleft lip • Cardiac (heart) defects • Kidney defects • Low muscle tone • Microcephaly • Epilepsy (seizures) – these occur in 90-95% of cases • Vomiting.
Abilities vary on a broad spectrum from those who need constant care that are non-verbal and immobile to those who are verbal, mobile, and interactive. At this point we are unaware if Josiah will talk, walk, or potentially lose his hearing and vision, nor do we know his lifespan. We have entered into an unknown world of disabilities since doctors are able to offer us little information on what to expect. We take one day at a time with our beautiful Josiah, and we thank the Lord for him daily as he teaches us so much about our loving, gracious, and merciful God. At this time Josiah does not eat by mouth, therefore he receives all of his nutrition via PEG tube. He projectile vomits up to 6 times per day and is still learning to hold his head up. At this time he is 10.5 months old and 11lbs. He has many appointments to include specialists for gastrointestinal, neurology, cardiac, kidney, primary care physician, and physical, speech and occupational therapies.
As a result, our family of 5 is moving from Florida to Vancouver, Washington to be near to our family. Greg’s last day of employment is April 9, 2016, at that time we will be driving to Washington state and Greg will begin looking for a job. It is in Washington we will have to establish a team of medical professionals to care for Josiah. We know that he will need open heart surgery to repair his heart defect (ASD) as the septum has yet to close because it is so large. We are also going to a WHS conference in California to meet other families with children like Josiah and the only doctor within the United States who specializes in this rare syndrome, with hopes to learn more about Josiah and how to care for him so that we can optimize his full potential in the Lord. Such funds will dedicated to Josiah's medial treatments/supplies as we are in the process of obtaining new health insurance in Washington, California WHS conference in July 2016 for 1 week, and moving expenses and finding a new home for our family to settle in.Thank you for your prayers and support while partnering with us to care for Josiah lifetime of special needs.