Caleb Glover
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This is my son Caleb; he was born on the 18th of November 1999. Caleb was born with Treacher Collins Syndrome. He also has Microtia, a severe bone conduction hearing loss and was born with a Cleft palate, which was repaired when he was nine months old. I already knew Caleb had Treacher Collins Syndrome before he was born, so I knew to expect it but I still had no way of knowing how severe the Treacher Collins would be. When Caleb was finally born nine days late I got to have a quick cuddle before he was whisked away to the Neonatal Intensive Care Unit. It was about an hour and a half before I was finally wheeled up to see him. But before I was my Dad (who had gone with the Drs to the NICU to make sure he would be ok) came and told me that Caleb had no ears, I had prayed my whole pregnancy that Caleb would have ears so that was the first big blow.
Then the Drs told me that Caleb had a Cleft Palate, which didn’t really sink in until two days later when I was told to try feeding him with a bottle for the first time. This proved impossible because 1: Caleb’s jaw was not strong enough to suck on the bottle. 2: what ever did make it in his mouth came out the nose. 3: and this looking back seems like the silliest thing of all, because Caleb’s jaw was so small and weak it would collapse over his airways which meant that he was constantly on his stomach to breath. To feed him I had to flip him on his back try get him to drink and then flip him back on his tummy before he went completely blue.
The hours straight after Caleb was born are a bit of a blur but I can recall getting up many times that first night walking down the hall and finally going and sitting next to Caleb with my hand on his back just grateful that he was alive.
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From birth Caleb had to be on his tummy to breath and most of the time he had a bit of oxygen. He was weak, hardly moved at all, never cried without going blue; I could only hold him if he was lying across my lap on his tummy (which I was grateful for even this). But I started asking myself how I was ever going to take my baby boy home if he couldn’t breath without being on his tummy.
My question was answered when Caleb was five days old, when I walked into the intensive care to find a swarm of nurses and Drs running around, calling out to each other. I instantly knew that one of the babies was in trouble, but not for a single second did I think that it could be my Caleb who was the baby in trouble, not until I saw his bed and all his alarms going off. A doctor instantly came over to me and told me to go back to my room and he would come and tell me what was happening as soon as they had stabilized Caleb.
My mother turned up about 20 minutes later, I filled her in on what I had seen and we waited for the doctors. Two doctors finally came and told me that Caleb’s blood oxygen levels had dropped several times during the early hours of the morning, before dropping dangerously low and not coming back up. He told us they would need my permission to intubate and that if it wasn’t done now Caleb would not make it. We then made our way back to Caleb who had been moved to another room, Bay 1 which is the room for babies who are literally fighting for life.
I signed the permission forms for intubation and was then handed a second permission form this one for a Tracheostomy, the doctor told me that this would be a last resort. This was the first time the Trachy had been mentioned. We were then given time to say our good-byes to Caleb and that we should be prepared for the possibility that we would not see him again. My father had arrived at this stage and took plenty of photos of Caleb and I and my mum.
The wait was excruciating, but finally they said he was back and we could go and see him, I didn’t even hear whether he had been intubated or if he had the Trachy. The sight of Caleb lying on his back with a tube coming out of his mouth was a shock and a relief, no Trachy. Then I was told that the intubation had been extremely hard to do and was already failing because Caleb's Jaw was continually collapsing the tube. Caleb would need a Tracheostomy ASAP.
But it could not be done at this hospital and he would have to be transported to the Westmead Children’s Hospital. Six hours later the transport team turned up and again we were told to say our good-byes because the trip to the next hospital would be dangerous for Caleb. The transport people were great, I sat in the front of the ambulance with the driver who talked and cracked jokes the whole time. In the back a male doctor and a female nurse whom both constantly jumped to Caleb’s aid as soon as we hit the tiniest bump in the road. The doctor was on his first day with the transport team (a comforting thought ‘not’) but they were all great as we traveled 40km an hour on a 110km an hour road.
We arrived at Westmead and Caleb was stabilized in the NICU and mum and I went to the Parents hostel for the night. Caleb would be having the Tracheostomy some time the next day.
Wednesday 24th of November 1999, exactly 1 day to the hour after I had walked into find my son in danger, I walked to his new bed in the new hospital to find the same thing all over again. All his alarms were going off the nurses and doctors were running everywhere. But this time the doctor came over and said they had to take him for the tracheostomy now! I signed the permission form and they were gone with Caleb as quickly as I had come in.
When he was back it was a shock to see him, and then all the worry started flooding through, how will he lead a normal life. And then I was told by our tracheostomy nurse that they had a family who was willing to meet us. Their little boy was 2 and he had the same syndrome and had a Trachy. Meeting the little boy was a blessing he was so active and although a little quieter then most 2 year olds it didn’t look like the Trachy had held him back at all. Meeting this family was a blessing and I will always be grateful to them for allowing us to meet their little boy. And for the best advice I have ever received. The mother of the boy told me to learn everything I needed to know about the Trachy care and to get Caleb home as soon as possible. This way the Trachy would not be so frightening and Caleb could start his life at home as soon a possible.
Four days later Caleb came off all oxygen and was the liveliest baby, he was almost rolling over within days. The Trachy lessons started straight away, first was the suctioning, after one go I felt nervous, but I decided that I would do them whenever I was there. My mum and I did the Trachy
changes and on only my third Trachy change the Trachy nurse asked if I would show another family how it was done. Only having just
learned how to do one I was petrified about stuffing up in front of these people. But when it was all over it turned out to be one of the biggest confidence builders I had at that time.
But out of everything that happened in those first five weeks the thing I remember most is the first time Caleb cried after the Trachy was put in, although he didn’t go blue anymore he didn’t make any sound either. It was the eeriest,
saddest feeling I have ever felt.
I bought Caleb home on the 22nd of December 1999 and that very night I took Caleb to his very first Christmas carols, and I knew from that moment on that Caleb and I (a single mum) would cope just fine with the Trachy. Just as the 2 year old's mother told me we would.
