Friday, September 08, 2006

Our son Charles Michael, was born on April 18th 2005. Charles meaning “strong, man” and Michael meaning “who is like God”. Charlie was born with a Congenital Heart Defect known as “Transposition of the Great Arteries“. Our journey began months earlier when his defect was detected during a routine ultrasound during my 20th week of pregnancy. Words can’t describe the sinking feeling that comes over you when the ultrasound technician seems fixed on the image before her, when just moments prior to that, we were elated over the news that we were expecting a little boy. We would have many ultrasounds over the next 20 weeks in an attempt to confirm his diagnosis. We spent those 20 weeks trying our best to prepare for the birth of this special child. We spent a lot of time in prayer. We prayed for healing, for strength and for peace with whatever may lie before us.

Charlie was delivered at Abbott Northwestern hospital in Minneapolis, MN. A team from Children’s hospital in Minneapolis was present during his delivery. Charlie’s color was blue at birth, as the pressure in his lungs was very high, and his oxygenation levels were very low. He was immediately taken from me and entrusted in the care of the Doctors and Nurses from Children’s. It would be days before I was able to hold my son for the first time.

My husband Paul went with Charlie via an underground tunnel which connects the two hospitals. I stayed at Abbot, forced to wait until the effects of my epidural wore off, before I was able to join my son and husband. Charlie’s medical team literally ran with him in an isolet in route to Children’s, as each moment was critical. Paul followed closely behind, as one of Charlie’s Neonatologists was conveying to him how very sick our little boy seemed to be. We would later be told that Charlie had been “their most difficult resuscitation in a long time”. Charlie would need an emergency surgical procedure shortly after arriving in the Neonatal Intensive Care Unit at Children’s. The procedure known as a Balloon Septostomy would create a hole between two of Charlie’s heart chambers. This hole would allow Charlie to get oxygen rich blood that he so desperately needed. The Septostomy was difficult because Charlie’s septal wall was unusually thick in diameter. The procedure, although difficult, was successful. This allowed him to receive some oxygen rich blood, but is only intended as a “temporary fix”. Charlie would need a life saving open heart surgery. In Transposition, the Aorta (which supplies oxygen rich blood to the body) and the Pulmonary Artery (which directs oxygen depleted blood to the lungs for oxygenation), are transposed. The heart defect does not allow for oxygen rich blood to reach the body. Instead, the oxygen rich blood keeps cycling to the lungs and directly back to the heart.

Charlie now had to recover from what the Neonatologist called “an extreme insult to his little body”. The following day a brain scan would reveal that Charlie had suffered a stroke. The stroke was either a result of the stress of a difficult resuscitation, or it may have possibly occurred during the difficult Septostomy. We were heartbroken by the news. The thought that our child might have additional challenges, besides that of a compromised heart, had never entered our mind. Now we know that so many of these special children also have additional health concerns.

We would spend the next ten days in constant watch over Charlie. I can think of very few things in this world more difficult than witnessing the suffering of ones own child. Feeling quite helpless, we had no other choice but to entrust the life of our child to the awesome and dedicated team who provided his constant care. We would also learn to put all things in the hands of God, as he was in fact Charlie’s creator.

Finally, the day we had both hoped for and dreaded had arrived. Charlie had a five hour long open heart surgery in which his Transposition was corrected. We prayed constantly for the medical team that would work on our son, and that God’s hand would also be present in the operating room. Surgery was successful, and it felt as though we had all experienced a type of “rebirth” for Charlie.

Now began the difficult road of recovery. His heart would be closely monitored, as theses little hearts can be very unstable following surgery. He would have moments of extreme tachycardia (fast heart beat), both high and low blood pressure, and periods of high fever. In addition to his unpredictable heart function, he was also suffering from episodes of painful narcotic withdrawal. He was given methadone, (commonly given to heroin addicts) to help curb those symptoms of withdrawal.

With all the challenges that lay both behind and before him he met each one with extreme bravery and determination. Each day he showed improvement and became more stable. Finally, we were able to move out of the Intensive Care Unit and onto a recovery floor. Having been fed only via IV or tube, Charlie had to learn to eat on his own before we could take him home. One week later he was eating on his own. We brought Charlie home on May 15th, 2005. Although, we had moments when we felt ill-equipped to provide his care, we were very happy to be home with him. We had missed our three year old, Sophie, terribly. We’re very happy to finally have the four of us together.

Charlie is now 14 months old, and he is happy and healthy! We have regular visits with his Cardiologist, and Neurologist. His heart looks great, and he may have little to no long term visible effects from his stroke. Time will tell. There is the possibility of another open heart surgery as Charlie enters young adulthood, but we continue to pray for his good health. Charlie has opened our eyes and our hearts in a way that nothing else has. We will never be the same and I thank God for that. I thank God for our Charlie, what a blessing he is.

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