Getting a diagnosis

After being born purple with the umbilical cord compressed and wrapped around her neck Bree was resuscitated and intubated. Her brain had received little to no oxygen for 10 minutes, but she was alive, they had saved our baby!

She was placed in a humidicrib to maintain her body temperature and put on a special machine called CPap which essentially breathed for her. Although it was a trying time for everyone Bree went from strength to strength. Within days she was breathing with just the help of oxygen and only a week later was able to go into room air.

We were moved to Special Care and spent a relatively uneventful 2 weeks waiting for her to put on weight, maintain her own temperature and feed orally. There was a joke going that she was the baby that didn't belong there. Not one staff member suggested there could be complications from her birth. No one suspected there was anything wrong with our perfect little girl at all. While babies around her were having various scans to ensure everything was okay our doctors were marvelling over Bree's amazing progress. Had they decided to do a simple head ultrasound we would have all known different, but they didn't and we remained oblivious to what laid ahead.

After only 3 1/2 weeks, weighing in at 2.3kg Bree was ready to come home. She was a perfectly healthy little baby with no health issues, a placid little girl and a great feeder, or so we thought...

Everything went well for 2 weeks, our precious little premmie spent all her time feeding and sleeping, that's exactly what they're meant to do. Then the screaming started, I wouldn't call it crying, she went from making no noise at all to a constant ear- shattering scream. We would joke and even appreciated it to start with, "there's nothing wrong with her lungs". After all the trouble she had breathing to begin with we were glad she could make that much noise. But the crying never faded, never.

Having experienced colic with our son we suspected that's what was wrong so we prepared ourselves for 3 months of hell. Sleepless nights, long drives in the car, pacing the room for hours. We'd been through it before, we knew what to expect. It wasn't easy, but hey, you don't get much sleep when they're newborn anyway right?

The problem was it never ended. The "colic" was present at all hours of the day, not just night time. Bree would stop crying if I held her, but would start again if anyone else took her. I started to suspect something was wrong.

I abandoned the idea of colic and moved to silent reflux, acid reflux in babies. That would explain the constant irritability and also why feeding was becoming a huge affair. I had to stop feeding her myself eventually and put her on a bottle. It still didn't help. I talked to her doctor and she suggested trying a new formula. It didn't help. I went back to the doctor and she suggested a lactose intolerance. So we tried lactose free. It didn't help. We must have spent $200 trying to find that miracle formula that would make it all better. We didn't find it. The closest we came to a solution was a thickened formula designed for reflux.

I asked for a referral to a pediatrician, since Bree had been born 8 weeks early I didn't think it was unreasonable to want to see one even without her feeding and irritability issues. I was refused. We persisted with feeding and I spent the majority of my time holding Bree in certain positions and trying to find the exact piece of equipment that would provide her with relief from her constant pain. Nothing worked. I went back and demanded a referral to a pediatrician, her doctor grudgingly wrote a letter. By this time it was Christmas holidays and the clinics weren't accepting appointments until late January.

That month was a nightmare. Nothing was helping anymore. Being the only person that could hold Bree was stressful, not just on me, but on everyone, especially her dad. All around us the babies of Bree's age were starting to smile and goo. They were moving onto solids and looking like regular 4-6 month olds. They were holding their heads up and reaching out for toys. They were even starting to sit up. I started to suspect it might be more than silent reflux.

No matter who I talked to about my concerns I was brushed away. Out of desperation I took her to the local hospital. The Child Health Nurse told me patronisingly "all babies cry", as if I wasn't aware of this. She then told me that I could get support for my obvious "depression". I left her office and waited to be seen by emergency. The nursing staff were sympathetic, but the doctor on duty had never heard of "silent reflux, or whatever you think she has". I voiced my concerns about her irritability and lack of social interaction. She told me to get some Infant Gaviscon (it didn't help).

One day in January I went to see our doctor for something unrelated, the receptionist and nurse commented on how big Bree was getting and I fell apart. I asked "Do you really think so, because I feel like she's never going to grow up. She seems to stay the same size and she doesn't do anything like a baby her age, not even her corrected age". The nurse decided to weigh her and we found out she was only 4.5kg. For her age and length that was severely underweight. The doctor made a call and all of a sudden we had an appointment with a pediatrician. Yes apparently getting an appointment was that easy!

I was convinced that this would be the end to all of Bree's problems. Yes, she was behind the other kids, yes she was under the average weight for her age and yes she spent her life in misery, but that was all going to change because we were going to get her reflux sorted now and that's what all her issues were from, right. Right? I had a niggling feeling that I was wrong.

The very next day Bree met her pediatrician. Our appointment went for well over an hour and in that time he did a thorough physical examination. He would pause every so often to ask me questions and then would go back to talking to Bree as he checked her sight, reflexes, responses, head control, concentration, social skills, the works. He wrote some notes and I sat in silence waiting for his opinion. I asked him if I was right in being concerned, he told me I was and now that he had met Bree he was quite concerned too. He said "I wouldn't put it all down to reflux, I think there is something neurological there, I want to do some scans". The whole world stopped in that instant. I should have burst into tears, but I thanked him instead. After 4 long months of everyone ignoring my worries I had finally found someone who listened, someone who cared enough to look into it and someone that was going to make it all better.

We had an MRI date scheduled for the following Monday. While her pediatrician hadn't hinted at what he thought Bree may have I had a few suspicions. I went into research mode. I typed her "symptoms" into Dr Google and I read our "Premmie Handbook". I came across Cerebral Palsy and it all fitted. I talked about it with my husband, but he felt it was better to just wait and see what the scan showed. It was a long 4 days between that first appointment and the hospital admission for her MRI. I tried to put it all out of my mind, but I couldn't help looking into it more. By the time the day came I had prepared myself for the "worst". In my opinion the "worst" would be permanent brain damage resulting in Cerebral Palsy. It was a good approach. When we got her diagnosis I wasn't shocked.

The pediatrician walked into our private room in the children's ward at Townsville Hospital. That should have been our first hint all was not well. You don't get a private room if your child is healthy. He sat down on the end of the bed we were sitting on and showed us the report that accompanied Bree's MRI. He told us that his suspicions had been confirmed and Bree had evidence of Periventricular Leukomalacia (PVL for short). What? We had little idea of what that was. I had read it briefly in relation to Cerebral Palsy, but it didn't mean much to us at all. So he explained that the white matter in her brain was diminished. That means that her brain can't process information properly. It is a form of brain damage and it is caused by lack of oxygen and blood flow to the brain for a period of time. The areas damaged affect her muscle control and that had been proven during her physical exam.

I don't know where the rest of my knowledge of Bree's condition came from or when it went from being PVL to Cerebral Palsy. Some of it was from her pediatrician, some from the report, a large amount was from Dr Google and CP support forums. The social worker gave us some brochures on it, the physiotherapist gave us some paperwork, the occupational therapist discussed it with us, the speech therapist showed us some exercises.

All of a sudden our lives were turned upside down. There was a constant flow of health care professionals in and out of Bree's room for the next week. We now had a regime of therapies to be performed every day. People started referring to our daughter as "Special Needs" or a "Complex Child". The social worker came to talk to us about our impending doom and the services available to help us cope with our terrifying new life.

Without realising it we had just opened the door to a whole new world. A world completely foreign to us. A world full of ignorance and judgements. A world where we had a child with a disability.

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