Samuel Worthington
TrachKid Profile
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Samuel John Worthington was born on February 11th, 2003 at 39 weeks. As I was 41 years old, I had a CVS (chorionic villus sampling) in early pregnancy to determine any complications. The results where that I was expecting a healthy baby boy. The pregnancy was uneventful, though my blood pressure was a little high towards the end. I had a straightforward labour, but retained the placenta so had to go to theatre straight after Sam was born to have it removed. My husband, John spent several hours nursing his son, who appeared to be breathing noisily and was described as having ‘facial dysmorphism’ by the midwife. He was beautiful, but the fontanelle was quite large and open right down his forehead. He also had hypospadias (urether opening is underneath penis, not at the end) He was happy to breastfeed, but, because of his appearance he was taken to the SCBU for blood tests. After my baby had been missing for about an hour, a nurse came to take me to visit him on the SCBU. She said he had turned blue and gone floppy whilst there so they were going to keep him for monitoring. He was on oxygen for a short while, but seemed to be fine and pink. When I tried to breastfeed his saturations kept dropping and he would turn grey and need to be put on the oxygen again. The decision was taken for me to express my milk and he was fed via a naso-gastric tube. After a couple of days they let me try putting him to the breast again. He seemed to cope ok for a while, then his saturations would drop again and he would need oxygen. The nurses then tried to give him my milk from a bottle – this was even worse – he couldn’t cope with the volume and turned blue again. Slowly, he learned to breastfeed. He coped ok because he could control the flow, though he fed very slowly, he never could handle a bottle.
We were seen by a geneticist, who said that because of the facial features and hypospadias, she suspected Opitz G syndrome, and only an ENT examination could confirm this as children with Opitz nearly always have clefts (lip, palate, or larynx). A laryngeal cleft would indicate why he was having so many problems swallowing (a laryngeal cleft is an opening between oesopaghus and trachea, allowing food to enter the lungs). A laryngoscopy and bronchoscopy at 6 months confirmed that Sam, did indeed have a type 2 laryngeal cleft, which would need repair. He also had tracheomalacia and a tracheal tug. The muscles in his oesophagus were very weak. We were told that Sam would need to be 10kg before a repair could be done. We went home and tried, with the help of a dyspaghia specialist, to wean Sam onto pureed foods. He struggled, and all fluids had to be thickened to the consistency of wallpaper paste. He couldn’t handle a bottle or cup, and was finally fed liquids from an open cup, but took so little he hardly wet his nappies. I continued to breastfeed for 15 months. We had frequent hospital admissions with aspiration pneumonia (9 admissions in the space of 3 months), and finally in October 2004 when Sam was 19 months old he was admitted to hospital to have his cleft repaired. He weighed just 8 kilos. The doctor said that Sam may need a temporary tracheostomy if his airway was narrow whilst the repair healed and we could expect him to remain in hospital for 4 – 6 weeks.
We were hopeful that all Sam’s feeding issues would be over following the surgery but swallowing studies proved that Sam was unable to coordinate a swallow safely and that ‘debris’ hung around his larynx for quite a while after he had swallowed and frequently spilled over into his trachea. He was given a nasogastric tube and we were told on no account to feed him. We were shown how to care for the trachy and arranged to go home in mid December. However, whilst in the hospital, Sam became ill with a virus called adenovirus, which caused damage to his lungs – this then developed into pneumonia, so he had to spend Christmas and New Year in hospital, and came home on 13th January 2005 with oxygen at night. A bout of influenza in March did not help his breathing and his oxygen was increased to continuous. It was also discovered that Sam had reflux (not picked up earlier because of the small volumes he was consuming), so in May 2005 Sam was given a Nissen and a gastrostomy.
As I write this (September 2005) Sam is still on continuous oxygen day and night, is still unable to swallow, and still has his trach. The ENT doctor is not happy to remove the trach whilst Sam still needs oxygen. He has scarring on his lungs which we have been told will only improve as he matures, and plans are being put into place for him to have a carer in preschool. Despite all this, Sam never complains, is always happy and loves dancing - he's got a great sense of rhythm! He is our little star and we love him!
Julie and John Worthington
Update Nov 2008
Sam is now happily settled in his second year at a mainstream school, he has his own TA who is fantastic with him. In fact, the whole school love him, everyone is really caring. He is learning fast and has just started writing in sentences (some of which are quite funny!). He has a great sense of humour and still loves music. He is now off O2 during the day which is a great step forward, it has taken 4 years to get this far, but now he only requires it while sleeping. He also tolerates his speaking valve all day, but is not saying any meaningful words yet, and by far the biggest thing is that he is finally able to take food orally. It's slow progress, but everything is heading in the right direction for Sam.
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- 3 years 34 weeks
Location
- Country
- United Kingdom
