Jake Silvey

While at a routine ultrasound exam the technician noticed Shannon had low fluid, not seeming to concerned she said it was best if we went to a specialist, just to be safe! A few weeks later we saw the specialist and they did a full exam. During that ultrasound the technician said everything looked fine but they were having trouble getting a good view of the heart. They said it would be best if we came back for an exam by an ultrasound technician that specialized in the heart area just to get a clean bill before they released her back to her regular OB.

Two weeks after that, when Shannon was 6 months pregnant, we went to this appointment. We were a little worried, who wouldn’t be!! The African American flamboyant technician laid her down and starting doing his exam. He was a funny guy making us smile from the beginning. About 5 minutes into the ultrasound his light heartedness went away and he got serious. Hmmm he said…Shannon and I looked at each other with fear in our eyes, Hmmmm what we asked? He said I see a problem with his heart. I am sure I do not have to say all joking went out the door! We asked “what is it” he said “looks like there is a hole in his lower ventricle”. We asked “what does that mean” he said “it is my conclusion your baby has Tetralogy of Fallot”. Man were we beside ourselves…we would have never guessed something like this would have happened to us. Shannon did everything right; took prenatals for two years prior, ate right, did not drink or anything! Later that day after meeting with other Dr’s, getting amniocenteses preformed and getting confirmation of the technicians diagnosis we met with a Genetic Specialist. She sat us down and explained to us in a little more detail what the diagnosis was. She went on to say that it was not too late to abort the baby. Shannon and I looked at each other with the same look in our eyes and both said that abortion would not be an option!!!! How crazy is that we start off the visit thinking we are going to get a release and clean bill of health and we end the visit with this lady saying it’s not too late to abort…..CRAZY!! Over the next three months, before Shannon gave birth, was spent meeting with specialists at Loma Linda Hospital. We met with some wonderful Doctors that have had a lot of experience with Tetralogy of Fallot. They gave us a lot of knowledge on this defect and prepped us on what was to come after birth with surgeries. We were scared but comforted by the fact that our baby would be in the hands of some of the top Doctors in the world!! Fast forward to November, 10 2006… we went to my nieces play in Rancho Cucamonga. After the play on the drive home (in the car) Shannon’s water broke. It was a pretty funny moment!! We got home grabbed our bags and off to Loma Linda we went. Shannon’s labor was pretty easy….early the next morning Jake was born. We were kind of stressed because they said do to Jakes condition they might have to take him immediately to surgery. We were lucky….he was ok and we actually got to spend a few minutes with him before they took him off for examination. This was a treat because they told us they would take him right away for exams! Jake stayed in the NICU for three days before they determined he could go home. They determined to do his surgery when he was a little older. We continued to see the heart surgeons while Jake lived a normal infant life. Jake did not act like he had a heart condition; he giggled and played like a normal baby. We were waiting for him to make his 1st grin. At one of our meetings with the heart doctors one of the surgeons asked if Jake had smiled yet, we said “No”. She suggested we see a Neurologist to see if he had any neurological damage, because most babies would have been able to smile by now! Great, Shannon & I thought…another problem? So off we were to explore this potential problem. In the mean time, Jakes heart surgery was scheduled and completed with success!! This was a nerve racking experience for us! Jake was a champ and did better that anticipated. He was out of the hospital in four days after open heart surgery, this is amazing to me!! The doctors said the repair on his heart went better than anticipated. They thought they might have to do a valve replacement, but after “getting in there” and checking it out, they decided to leave the valve alone and just repair the hole in his heart. In the mean time, Jakes heart surgery was scheduled and completed with success!! This was a nerve racking experience for us! Jake was a champ and did better that anticipated. He was out of the hospital in 4 days after open heart surgery, this is amazing to me!! The doctors said the repair on his heart went better than anticipated. They thought they might have to do a valve replacement, but after “getting in there” and checking it out, they decided to leave the valve alone and just repair the whole in his heart. We will have to get annual echocardiograms to keep an eye on his little heart. They say he probably will not need another surgery. Since his surgery we have had several appointments with Neurologists and Genetic Specialists in regards to his facial paralysis. He has been diagnosed with a rare syndrome called Moebius Syndrome. Not much is known about this syndrome and the only hope he has for a chance to smile is to undergo a Neurological surgery where they implant some nerves from the legs into the cranial area. Poor kid cannot smile but you can see how happy he is in his bright blue eyes!! We will consider the surgery later in his child hood..

Author: Tim Smith

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