Essential Baby member and Mum, Sam, shares her family's brave story
Our journey to parenthood wasn?t an easy one. It took 3 years, surgery to treat endometriosis, IVF, a miscarriage and a sea of tears to fall pregnant. Then, 30 weeks into my pregnancy, we found out I had complete placenta praevia (where the placenta completely covers the cervix), a condition that could lead to life threatening haemorrhaging.
As a result Cadel was born at 32 weeks after I went into labour and started to bleed. He was delivered via emergency ?C?-section under general anaesthesia on the 11th of September 2007, and thankfully he was born as healthy as a 32 weeker could be. We thought the hard part was over, and that by his due date we would be home with our healthy baby reminiscing about the long 8 weeks in hospital. It turned out that Cadel?s dramatic entrance into the world was just the beginning.
At around 2-weeks-old Cadel became unwell. He was lethargic, vomited regularly and I began noticing some odd eye movements. It became apparent how serious things were when Cadel seized and turned blue while I was changing his nappy. A quick thinking nurse gave Cadel some oxygen and he began breathing again, but he continued having seizures throughout the day and needed oxygen several times. Later that evening he had yet another seizure while his paediatrician was examining him. She decided that they should begin treating Cadel for an infection immediately and also started him on anti-seizure medication. Blood test results revealed an infection, and an ultrasound showed signs of either an infection or a bleed and increased fluid around the brain. Cadel had meningitis.
The combination of the meningitis, morphine and anti-seizure medication made him too tired to breathe on his own so he went on a ventilator. We spent 9 days holding Cadel?s hand, reading to him and hoping that he would survive the terrible infection that was trying to destroy his tiny brain. We were told that Cadel had E-Coli meningitis; the statistics say that he shouldn?t be here with us today.
Expressing was the only thing that kept me sane while Cadel was in NICU, giving Cadel precious breast milk was all I could do to try and help him beat those bugs. We felt helpless; it was heartbreaking not to be able to hold him. I dreaded going home at night and Phil would practically have to drag me away from hospital. I felt guilty and I despised having to be away from Cadel. It was a terrifying time, and I began having nightmares. Even now there are times when I wake up having dreamt about monitors alarming.
Slowly Cadel began to recover and his morphine cocktail was slowly reduced. He began to spend short periods of time awake; our little man was coming back to us! He spent nine days on the ventilator and three more weeks in Special Care. On the 1st of November 2007 we finally went home as a family.
A week after we got home we took Cadel for a follow up ultrasound on his brain, it showed increased fluid on the brain, and Cadel was diagnosed with hydrocephalus (abnormal amounts of cerebrospinal fluid on the brain that is unable to drain away). We were flown down to Adelaide (we were living in Darwin) where he had his first shunt operation on November 16. The shunt was placed to divert the excess fluid from his brain to the space in his abdominal cavity, without this the excess pressure would lead to brain damage and eventually death. The surgery went smoothly and we were sent home.
We were due in Adelaide in February for a follow up with the neurosurgeon. Cadel began having seizures in January, so we organised an MRI to be done to take with us. We had assumed scarring on the brain was causing these seizures, and that Cadel was outgrowing the doses of medication that were previously controlling them. nfortunately the MRI showed that it was actually the hydrocephalus causing the seizures, we were told that his shunt was no longer working.
When we arrived in Adelaide and met with Cadel?s surgeon she told us that his shunt was working perfectly, but that there were several other pockets of fluid within his brain that were unable to drain through the usual pathways. She told us that the ventricles (fluid filled spaces) in his brain looked like ?a row of sausages?, separated by masses of messy debris left behind by the meningitis. We were told the only way to help the fluid flow correctly was with risky microscopic brain surgery, but despite their best efforts he would more than likely need extra shunts. We immediately made the decision to stay in Adelaide permanently to ensure Cadel received the ongoing care he needed.
Fast forward 12 months and Cadel has had 17 separate brain surgeries, 43 scans, survived two more infections in his brain and spent over six months of his life in hospital. Fortunately, unlike when Cadel was in NICU/SCN we are now able to stay in hospital overnight with him. Phil sends me home on his days off so I can have a decent sleep at home and he can be with Cadel. Even though Phil is with Cadel it is still so hard to leave. Going home without my family is like going home without my heart. It hurts in a way I cannot put into words.
The great news is that as I write this we have been home from hospital three and a half months; this is the longest amount of time we have spent at home without a hospital admission. I cannot tell you how wonderful it is to go into Cadel?s room each night before I go to bed and see him in his cot and to wake up every morning and know he is home!
Cadel now lives with two shunts, and each of those shunts drains two separate areas of the brain. Shunts will fail by becoming blocked or infected in 40% of paediatric patients within the first year of being placed. Cadel has this risk times four. Signs of shunt complication in a child Cadel?s age include irritability, fever, vomiting and lethargy, so every normal childhood illness needs to be treated as a possible shunt complication and we have to make a trip to the children?s hospital.
Parents of children with hydrocephalus can seem like the most paranoid parents in the world and we have been treated as such on more than one occasion. But we stick to our guns when we rock up to the ED because we always seem to know when something is wrong. We have a wonderful team of doctors who always listen to our concerns, but convincing doctors that don?t know Cadel that something is wrong is a challenge, he is always so happy!
When issues with the shunts are suspected a scan of some sort is inevitable. For young children with developing brains, repeated exposure to radiation such as that which occurs during a CT scan can lead to an increased risk of having a brain tumour later in life. Luckily Cadel has now reached a point where his doctors are so happy with how his shunts are going that they no longer need routine scans to check on them, so for now this is one less thing to worry about. On the flip side, knowing that we aren?t having regular scans means we need to be extra vigilant in watching for signs of shunt complications.
Now we are home our main focus is therapy. The meningitis has left Cadel with damage to the areas of his brain that effect his muscle movement and it is likely that in the future he will be diagnosed with Cerebral Palsy. Cadel does hydrotherapy, has daily massage, daily physical therapy and has a long list of specialists involved in his ongoing care. His development is delayed, but Phil and I don?t worry about meeting milestones, we accept that he will set his own pace. Out of hospital he is going ahead in leaps and bounds, we love watching him grow and learn.
Cadel has had barriers put up in front of him at every turn, and he hasn?t just broken them down, he has smashed them! Every day he amazes us not only with his progress, but with his cheery personality. He is a happy, cheeky little monkey and despite everything he has been through he has a smile and a cuddle for everyone he meets. We are so incredibly lucky to have Cadel in our lives and are grateful each and every day that he fought so hard to still be here with us.
My son, quite simply, is my hero.
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