Taj's Story

The following story has been provided to us by Tajs family and has been included exactly as received.

Kyle and I found out we were pregnant with our second child and were so excited, our first child had terrible colic for about 5 months and we didn’t get to enjoy her as a newborn, I was really excited to enjoy my second baby. My pregnancy was wonderful, I kept fit and didn’t eat too much junk food, and we were expecting a healthy baby. Our gynecologist didn’t pick up any problems in the scans. Taj was born on the 6 September 2007, he was born in the evening and all went well with the birth, no drugs and all natural. After the birth my husband, Kyle was concerned about Taj’s “snuffling” breathing and asked two doctors to check him over immediately, they said he was a fine 4.185 kilo baby.

That night Taj wouldn’t feed and he slept for the rest of the night on my chest, (in retrospect, thank God that he did as the position probably meant he was able to breathe through the night.) In the early hours of the morning the lactation nurse found that he had a cleft palate and we consulted the pediatrician who diagnosed Taj with PRS.

Not much was known at all by any of the specialists we consulted in those first few hours and days, the pediatrician advised us not to head down the tracheostomy route - and had actually said it was a killer and difficult to live with. We had a meeting with a speech therapist who advised us to use a “squeezy” bottle to feed Taj, this was just basically squeezing food down his throat. The speech therapist did not handle the situation well and basically scared me and Kyle half to death during the visit using a stats monitor. She wanted to monitor his oxygen levels whilst feeding with the bottle, and instead of low oxygen levels his heart rate plummeted too – this was mostly due to her knowledge of how to work the stats monitor – but she succeeded in setting the tone for the next few months to come (one of not really knowing if our boy would live, and that feeling that we were all just hanging over the edge of a very steep cliff)

Taj spent another week and a half in hospital being tube fed through his nose. Things started to get better and he started taking more from his squeezy bottle. The only concern the pediatrician had was his weight and feeding, once feeding well, we were allowed to take him home. Had the peadiatrician taken the time and care to consult with other more experienced doctors we probably would not have been allowed to take the little guy home.

We took him home and lasted only 3 and a half days before things spiraled out of control, he stopped feeding, sleeping and was crying a lot, this is where I as a mom really felt I let him down, I feel I should have done something for him sooner. Anyway, I called an old friend to have a chat (vent), and within half an hour of that call his business partner, Vincent (Gabriel’s dad) called back. He told me about Children’s Red Cross Hospital and the incredible sister Jane Booth. My husband, Kyle, Taj and I managed to get through that last night in a state of fear, tears and sleeplessness, and went to see Jane Booth the next morning.

At the hospital Jane had called her colleagues into her office to take a look at Taj, and we realized how severe his struggle for breath had become, they scheduled an emergency Tracheostomy operation at the private hospital up the road, and Kyle and I set out for a horrifying drive to the hospital – not knowing if our boy would be alive when we got there.

After the operation we were shocked to see that Taj had no voice, as the tracheostomy took the wind from off his vocal cords - this was just one more thing we weren’t prepared for. The next few weeks consisted of learning to manage the tracheostomy, this was both grueling and terrifying for two un-medically trained people to deal with. In the end though, it was painfully obvious that with Jane Booth’s guidance, Kyle and I were better equipped with knowledge and skills to manage the trache than some nurses and doctors at the hospital and that we would do a better job with Taj at home in our care.

Although the trache had saved Taj’s life, it meant for me and my family a whole new way of living and we all went through our hardships. Kyle and I were like “ships in the night”, just living one day at a time, and our darling 2 and a half year old daughter, Tatum, bore the brunt of highly stressed and exhausted parents. We were all effected and to this day we all show signs of how this experience affected us.

Taj had an operation at 3 months old for a bi-lateral hernia (poor boy) and then at 6 months he had the palate repair operation. From the age of 5 to 6 months things were so much better for Taj, he was able to eat solid foods and really enjoyed them and Kyle and I were so much more relaxed about managing the tracheostomy. Then when Taj was 14 months we moved to New Zealand. At 17 months, February 2009, Taj had the tracheostomy removed. After about 3 or 4 months he had a final operation to close the stoma (tracheostomy hole) on his throat.

Taj has had monthly speech therapy sessions and has just recently been released by his therapist as she feels his speech to be normal if not advanced for a two year old. We will be keeping an eye on his palate over the next few years, but other than that he is a normal, extremely healthy and extremely happy young boy. Although we think ourselves to be at the end of this tracheostomy experience, the residue of what we all went through has stayed with us. My husband went through a minor case of depression some months after we arrived in New Zealand and I feel as though I have aged quickly and somewhat before my time. However we as a family made it through the hard and dark, sometimes lonely times and we have come our the other end as a close and loving family with a very strong bond. We hope that other families take a bit of hope out of Taj’s Story and understand that there is light at the end of the tunnel.