NIXONRetrun to 22q Stories
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Hello, we are from Regina, Saskatchewan, Canada, and this is our story. In December 2012, our son, Nixon was born into our world weighing 7 lbs., 2 oz. At our 20 week ultrasound, we had first been made aware of a congenital heart defect. Throughout our pregnancy, my wife and I were informed that Nixon had pulmonary artresia with VSD. They also made mention of him having either a very small or absent thymus gland, along with only one umbulicular artery. During the pregnancy, they decided to test the chromosomes to see if the 22q11 was present in Nixon, however the results indicated chromosome 22 was normal.
After being born up in Saskatoon, Saskatchewan (as we had been dealing with the cardiologists up there), Nixon was in the NICU for 6 days. After that, they decided to fly us up to Edmonton, Canada to have a shunt put into the heart. Nixon was up in the NICU for 5 days, however no shunt procedure was needed at this time. Nixon was then flown back to Regina Special Care Nursery where he spent 5 days. After being home for nearly a month, Nixon had seizure like symptoms, which had us back in the Regina Hospital. After being medicated and treated, and later flown up to Saskatoon, it was said that Nixon’s calcium levels were extremely low, resulting in the seizures. They also stated his parathyroid glands weren’t functioning properly to accept the calcium, and that he also may have had pneumonia. Nixon was in the hospital for over a week, where they tried to determine Nixon’s problems.
On February 22, 2012, we attended up to Calgary’s Children’s Hospital where we met with a immunologist doctor. Our fear of the affects of the missing thymus that we had always worried about from the start had come to life. Nixon’s T cells (infection fighting cells) and B cells, were very low (only having 12 out of 1500). This meant that Nixon basically had no immune system, making him very susceptible to infection. The doctor informed us that children with a situation like this are likely to survive to 2 years old. The doctor did inform us of a thymus transplant, which is done at Duke University, that would transplant thymus tissue into Nixon’s thighs to have him build his immune system and hopefully into a somewhat normal lifestyle. At this time, we are waiting for the go ahead on the heart surgery to have it repaired. Once that is done, and the recovery has taken place, we will be off to Duke University for the thymus transplant. Despite the stress, and frustration over the situation, my wife Shantal and I are very fortunate to have Nixon in our lives, full of joy and happiness.