Katarina Setubal
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Hello, I would very much like to let all your readers know about my little girl Katarina. She was born on 9.11.95, 41 weeks of gestation. When I was pregnant with Katarina I had all the appropriate pre-natal care and scans that were available. There were no signs of abnormalities during any of the scans. I had great difficulty giving birth to Katarina (two days of contractions with no result) and eventually I was rushed in for an emergency caesarean section. Katarina was taken straight to special care because she had breathing difficulties. In the early stages of her life doctors were unable to name her condition. Initially we were told that she had Pierre Robin Syndrome and Sticklers (severe scoliosis of the spine). We took her to Great Ormond Street Hospital in London for tests and they fitted her with an nasal prong to assist her upper airway. Her only nutrition was milk through a nasal gastric tube. We went back home to Jersey in the Channel Islands where we live and suctioned her continuously through the nasal prong and fed milk via her nasal gastric tube.
After a few weeks we became aware that she was still having great difficulty breathing and she often went "blue" and on occasion stopped breathing altogether. She went back to Great Ormond Street Hospital at 5 months of age and it was then discovered that she had 90% tracheobroncho malacia. She did not have a long life expectancy and a tracheostomy operation was her best option.
Following the operation she spent a number of months in the intensive care unit in Great Ormond Street where we decided to have her baptized. She was critically ill for months and unable to return to Jersey until she was nine months old. She then returned to Jersey at stayed in the intensive care unit for just under a year. She has actually been hospitalized for three of her four years.
Last Christmas we were able to take her home and she has had a great summer with us (the photos show her on the beach). The winter however is very difficult because she is very prone to catch every germ going.
We are looking forward to our second Christmas at home with her this year. As you can see from the photographs she is very small for her age, the doctors have given her condition the campomelic dysplasia. She has severe scoliosis of the spine which has not been operated due to the risks incurred by her respiratory problems.
I would be very keen to hear from any other parent who is in a similar situation to Katarina.
