Imagine providing care for a child with a life-threatening condition for 24-hours a day, seven days a week. Now imagine having to provide for your family, raise two other children and take care of your sick child. Unfortunately this is the reality for thousands of families in Arizona. Ryan House Community Breakfast will be held on Tuesday, May 10, 2011 at the Arizona Biltmore Resort and Spa. This annual fundraiser allows us the financial support to continue the much needed services provided at Ryan House.
Until recently, there was little help for these families, but in March 2010 Ryan House opened its doors, unveiling an oasis of respite, filled with understanding and care. At Ryan House, families can entrust their child to the certified care team while they take a short break from both the emotional and the non-stop care their children require at home.
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We, the LEON family have been asked to write a story about William from diagnosis to current to feature at the Ryan House Community Breakfast, as well to be featured on the Ryan House website. We were so excited to write a story about our precious little guy, and I though I'd share it on my blog.
In March 2009 William's mom and dad learned that they were pregnant with their 2nd baby that they had been hoping for and dreaming about. In the very early stages of pregnancy, an ultrasound performed at 12 weeks of pregnancy, some very frightening abnormalities were discovered in our baby. An infalaseal, severe micronathia, and an abnormal measurement of nucal translucency fluid. William's parents were advised to have amniocentesis testing for chromosomal abnormalities, and the abnormalities found on ultrasound imaging led my medical team at that point to think our baby had the appearance of a Trisomy 13 (Patau syndrome), Trisomy 18 (Edwards Syndrome) or Trisomy 21 (Down Syndrome) baby and the future outlook for my unborn baby apeared to be not good at all. After the amniocentesis results came back NORMAL and overruled any chromosomal abnormalities and the results came back XY meaning a BOY!!! William's parents were greatly relieved and excited. BUT there were still the abnormalities discovered on the ultrasound imaging that were discouraging. Although the infalaseal and unusual measurement of nucal translucency fluid were ruled out, there still was a suspicion of abnormalities. This put William's mom and dad around the 18 week point in their pregnancy. The medical team advised William's parents that they wanted to treat the pregnancy as a high risk pregnancy, monitoring the baby with ultrasounds twice weekly until they felt everything was stable, or for the entire pregnancy if needed. The next thing discovered on ultrasound was that William was measuring much smaller than the typical baby during the course of his development in utero and was labeled with Extreme Intrauterine Growth Restriction (IUGR). Week by week, month by month, William was still much smaller than average. This left the Perinatologist's (High Risk Obstetrician) very worried of an early devastating delivery, or even a miscarriage. By week 36, nearing the 40 week mark of pregnancy, baby William was breach and measuring at 2 pounds 7 ounces in utero. This also concerned the Perinatologist's and they advised to make a plan of delivery at 37 weeks of pregnancy via C-Section. Baby William was considered stable in utero, but was not growing. The hope for William's parents and the medical team was to deliver him and see if he would do better outside of the uterus rather than keeping him in utero for a few more weeks to get closer to the true full term 40 week point.
On November 3, 2009, dad Richard, mom Crystal and big sister Isabell welcomed their new baby boy, William George Leon into the world weighing in at 2 pounds 14 ounces and 14 inches long. He was immediately transported to the Phoenix Children's Hospital Newborn Intensive Care Unit with a special oxygen mask to help support his breathing. Little baby William was born with an unknown genitic syndrome, with multiple congenital anomalies (birth defects) and was diagnosed with a long list of medical conditions. These conditions include: Giant cysterna Magna on brain, Coloboma on left iris, cleft pallet (and fed 100% through his Gastronomy Button, previously had a nasalgastric tube for feeding), mild pulmonary hypertension with an Atrial Septel Defect (ASD), multiple Ventricular Septal Defects which closed up on their own by week 3 after birth, and Fused Horseshoe Kidneys. When William was born, he was not fed any breast milk until he was 2 days old, and received all of his nutrition through an IV. William;s tiny veins could not support the IV nutrition and kept blowing out, requiring the NICU staff to re-poke for a new line multiple times in the first 3 days of his life. On day 4 in the PCH NICU, William went in for his first surgical procedure. He had a Broviac central IV line- a catheter inserted deeper into a main vein of the body so he could receive his IV nutrition properly. By week 2 in the PCH NICU, William was receiving all of his nutrician through his NG Tube (being fed donor breast milk), and the broviac was removed. After this William did nothing but gain weight and make progress towards a NICU discharge. William's mom and dad received the best Christmas present ever in 2009- William was discharged from the NICU on Christmas Eve. He was the most precious Christmas present, and loved going home to finally meet his big sister and be with his mommy and daddy all the time. Having a baby in the NICU was extremely challenging for the Leon Family, but William's mom, Crystal spent every single day at the hospital with William and he also had many visitors from family and friends.
William is now 18 months old, weighs 18 pounds and has quite the story to tell. He had 15 hospitalizations and 8 surgical procedures at Phoenix Children's Hospital in 2010. He has 14 core physicians following his medical case including our pediatrician, a pediatric surgeon, a plastic surgeon, cardiologist, pulmonologist, neurosurgeon, pediatric urology specialist, nephrologist, geneticist, developmental specialist, opthomologist, ear nose and throat specialist, gastrointestinal specialist and the Palliative Care Team at PCH follows William when he is admitted to Phoenix Children's Hospital. He is the sweetest little boy, and has a tiny little smile and laugh that would light up anyones world. He has an amazing big sister named Isabell, who also has special needs and medical issues including a heart defect, she is hearing impaired and slightly visually impaired as well as overall developmental delays. Isabell loves her little brother so very much. The Leon family feels very lucky to have two amazing children, who are so happy despite all their medical conditions. In the life of planning, and organizing clinic outings, surgeries and life itself- The Leon Family make the best of every day with William, Isabell and all the special tools they need for life. The Leon Family also feel so very fortunate to be able to take William to their beloved Ryan House for much needed Respite Care, and feel so lucky that they live in Arizona where this amazing facility is available to the community.
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