Christian Rowan

 

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Christian’s fight didn’t start when he was born. He was conceived with a genetic mutation called CTLA4, this mutation was passed to him by his mother. Due to her having this mutation carrying a child to term was very difficult. Christian was a twin but early in the pregnancy his mother miscarried. Thinking that she no longer had a baby she went in to get checked to make sure the whole baby passed, she then got an amazing surprise that she was still pregnant. That baby turned out to be Christian. From that moment on the pregnancy was extremely difficult and she was high risk. Christian did not want to stay inside so he emerged into the world December 17, 2018.

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His due date was January 4th,2019. Due to him being this early they monitored him to make sure he was healthy. He appeared to be completely healthy when he was released from the hospital. However, they did not do the genetic screening that was requested by the parents.4

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A few weeks went on and Christian had his well child checkup.  During this checkup the pediatrician determined that he wasn’t gaining weight. So, she took him off breast milk and had him switch to formula thinking it was the lack of calories in the mother’s milk. Months went on and during that time he started projectile vomiting and losing weight extremely fast. He had multiple trips to the emergency room due to dehydration and that is when the family started pushing for answers. This began the journey to find out what was wrong with the little baby boy.

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Christian was admitted to Randall Children’s Hospital in Portland Oregon for failure to thrive. He was there for 7 days before he was released home. During this stay, the hospital changed his formula twice and the amount of calorie intake. Thinking they had fixed his weight problem they sent him home and set up follow ups with his pediatrician.  Once he saw the pediatrician he was evaluated and scheduled weekly weight checks. At his first weight check he had gained an ounce, so we were all excited thinking it worked, and he was going to start gaining weight. This was not the case. The second weight check rolled around and he had lost 7 ounces. This once again worried his doctor and he was sent back to Randall’s and admitted.3

Round two at Randall consisted of blood work and imaging. Mom had asked if they would do the genetic screening for CTLA4, but the doctors didn’t know what it was and were focusing on what they thought the problem could be. Five days later and another formula change down they decided he was allergic to a milk protein and sent him home on a new non-milk base formula. Thinking the problem was solved the family went home and did the weekly weight check routine.

At the first weight check they noticed he hadn’t gained any weight, but they weren’t worried because he hadn’t lost any weight at this point either. The second weight check came up and he had lost more weight and he was looking extremely pale with a very distended stomach. The doctor wanted his parents to take him back to Randall, but the parents refused and decided to take him to see the mother’s doctor in Seattle at Seattle Children’s Hospital.

5 At Seattle Children’s Hospital Christian was admitted, his organs began to shut down due to lack of nutrients. They set him up with iv fluids and nutrients. Then they ran all the same blood work, but they also ran the genetic screening for CTLA4 due to his mother having it, it was a possibility that Christian could have been born with the same damaged gene. Two weeks went by and they finally received the results. He was positive for the mutation, but they had no clue how to treat this little baby due to him being the youngest ever to have symptoms of this mutation.  Imaging was done and showed nothing, so they decided to do a scope. The scope showed that he did not have villa in the small intestine to absorb the nutrition going into his body. They then switched the formula to a completely digested formula and put him on a feeding tube. The family stayed in the hospital for 4 weeks until he was released.

Christian was released with a feeding tube and a feeding plan. This has been extremely difficult since he loves to pull the tube out of his face. He has gained 8 ounces since he was released 3 months ago which is not a lot. He is still the size of a one mo10nth old weighing in at 12lbs 5 oz. His doctor appointments have been moved from every other week to every week and sometimes twice a week. They still do not have a plan of treatment for Christian, but they hope to have an idea of what to do in the next couple of weeks. There are so many unknowns still. For now, he is stable, and plans are being made to move forward.

Thank you for all the prayers and support of this wonderful family and please continue to Pray for Christian. He is still a long way from recovery and has a long road ahead of him.