auriculo condylar syndrome


When Can We Have Kids - Part 2

Date of article 12.01.2003

NOTE: The original date of this article was 2003 but now includes comments up to 2007

Well we've been a busy family with the arrival of our beautiful baby girl Kayla on the 8th may 2002 & what a story that is so read on Prior to Kayla's birth we had regular visits to National women's hospital, where we {well mainly my wife} were looked after by another Doctor who really listened to us, Dr Lesley Mcgowan, she agreed with us that a "planned" earlier rather than later caesarean was in the best interests of Kayla. A point I must make here is the Ultrasound Radiographers must make it a point to get a side profile of the babies to check for Micrognathia. Bodee's wasn't picked up at all & Kayla's was thanks to Bodee. Other parents we've spoken to recently have said that theirs wasn't picked up either, & if we get back to kayla, if she was in the not picked up category she most likely would have died. But as i've said Kayla's birth was planned, well there was plan A, B, C, which meant we went with plan D, that means, National Women's Blue team would take all the equipment they needed to Starship hospital & Kayla would be born there by caesarean then immediately have a Tracheotomy. We believe this birth would have been a first at Starship. But then plan D came into effect, just 36 hours before Kayla's Starship birth another one of the Good Guys an anesthetist by the name of Paul Baker recommended a technique called an Exit procedure but this would have to be done at National Women's hospital & so it was changed for the last time & Starship took their equipment there & the Exit procedure was done & Kayla was here. I can still remember all the emotions as I sat in the waiting room hoping Kayla would be alright, while thinking about our son Zavier who we lost at the same hospital 2 years earlier, then the thought of loosing their Mum crossed my mind, but this time the Doctors were smiling as they walked towards me so I new things were ok. Thanks to everyone involved in Kayla's birth. There are too many people to remember or mention, but if you read this site then you'll know who you are. This also includes Hesketh Henry who always fully supported us. 4 hours after Kayla's elegant entrance she was taken to theatre Over at Starship for her Tracheotomy & unfortunately caught a few bugs while there, Osteomyalitis & colonized MRSA {super bug} which turned our stay there to 5 weeks & then 3 weeks at home on IV drugs 4 times a day. Two weeks after the IV finished Kayla caught Bronchiolitis & was back in Starship for 16 days, with a week in PICU. Both Bodee & Kayla have a syndrome we believe is called Dysgnathia complex which seems to be rare for one child to have but now we have two. You are always in the position {with any child in hospital} where you feel you have to check the decisions you make, or the consents you sign, it's scary as most parents can testify but now we have twice as much time under the knife & I can feel the adrenalin levels rising. Unfortunately the knife is the only way in some cases & a pill won't fix it, & that's the way it is with us. I can remember when Kayla was going into theatre for her Tracheotomy & the Registrar asked me if I understood why she was having the operation & if I would sign the consent form, I said to him "you could just about tell me anything as why the operation was happening & I would still sign that consent form" It's right at this point in an operation where the line in the sand is drawn between Doctor & parent. As a parent it does feel like your signing your kids life away & I feel guilty as I"am doing it. I know the Doctors don't like saying it like that, but for me that's how it is. Don't get me wrong, I really do like & trust the Doctors we've been seeing over the years mainly ENT & Plastic's, & now they've become involved with & part of Kayla's life that reassures me, but each operation is scary & each one has general anesthetics they say that there isn't any proof that too many general anesthetics has long term side effects, but one Bodee has {ketemine} is a bit like LSD so I think too much over time can't be a positive thing, & Bodee is hyperactive already, but again don't get me wrong as Bodee does comes out of the operation real well when it is used, & they say it has less effects on the respiratory system while anaesthetized. In the past decade we've spent a lot of time at Auckland's hospitals, things are getting better but as a Dad I can testify that there is less room for us on the wards. So thanks to a couple of male Nurses, & probably the only ones I've met - Lachlin on 26b at Starship & Eddie at Kids first, us Dads can have some sports updates & male sanity while in an unpleasant situation, keep it up guys us Dads need ya. As I write this next bit it's been a couple of months since I've touched this page {but as you read, the procrastination will have passed} Bodee has just been in theatre for 7 hours having his 4th Mandibular distraction operation. As usual we sat & waited anxiously in our room, but this time in isolation as we have to have Kayla with us & she has MRSA. You know it doesn't get any easier signing those consent forms, you know you have to even though you don't want to, I felt the guilt thing again today & I hate it. This next bit is 5 weeks later Kayla has just been in Starship for 4 days getting a Gastrostomy which hopefully makes life a bit easier as she keeps pulling her nasal feeding tube out, also Bodee has to go back into theatre next week to fix his jaw as he fell over & knocked the pins in his jaw Distracters & broke a piece of bone off so he needs them reattached, plus they are new distracters in NZ & might need fine tuning. It seems like we are always coming & going to a hospital & I can't say I like the places much as I seem to have a disagreement with some plonker while I'm there, whether it be with a Reg or a parking warden, while I'm on the subject, the parking at hospitals in Auckland {don't know about else ware} has become a bit of a joke & a right swindle. Parents of extremely sick children like ourselves have had to literally run from the wards to stop their cars being towed while in some places trying to find NZ$14 a day to park & if you are in there for weeks, months, or even years well you can add that up, & also the Dr's & Nurses have to pay too. I wonder if it's cheaper to park in New York? Any way I'll leave it here for now & will add more as time progresses.