The Two Week Wait
10 Questions To Ask Your Care Provider
Pregnancy After Miscarriage: How Long to Wait Before Trying Again
Bleeding In Pregnancy
Birthing Your Placenta : Active Management versus Physiological Management
5 Common Postpartum Experiences
In this week’s episode I interview Melanie Dimmitt about her two births and her experience as a special needs mum. Mel talks us through the moment she was in hospital with her first baby, Arlo, awaiting an induction. She was watching the fetal heart rate monitor when she noticed a dramatic fall in Arlo’s heartbeat. Ten minutes later he was born via emergency cesarean and once awake, Mel was wheeled into NICU to meet her baby boy. Mel and her husband Rohan stayed positive in the months that followed but when Arlo was six-month-old he was given a diagnosis of Cerebral Palsy and they started a daily treatment plan with a variety of specialists. Overwhelmed by their new reality, Mel used her journalism skills to reach out to a variety of special needs parents. The result is @the_special_book; an uplifting companion for parents who are navigating their child’s diagnosis in an often overwhelming (and initially terrifying) special needs world.
Mel and her husband Ro fell pregnant easily although it wasn’t the smoothest of pregnancies. She had a bit of bleeding at the start and at the 20 week scan the sonographer noticed that the baby had a hole in his heart. From then on they were closely monitored by a cardiologist but considering the possibilities, they stayed positive. Mel didn’t do any official birth preparation classes but was simply focused on going with the flow, a skill she most definitely needed for her birth.
She was four days past her due date when she noticed that Arlo’s movements had changed. “I always remember the midwives being very adamant that if there were any changes in the baby’s movements I needed to go to hospital so I called them and they encouraged me to go in for monitoring.”
Everything seemed fine so the hospital sent her home but later that afternoon Mel noticed that his movements had changed once again. She presented to the hospital and they decided to admit her with plans to induce the following day. She stayed overnight and was regularly monitored and the next morning she was transferred to the birthing suite in preparation for induction.
“I was waiting for the midwife to come back to start induction and I was hooked up to the fetal heart motor. Ro and I were watching it and all of a sudden it dropped really dramatically so we called the midwife. She couldn’t find a heartbeat at all so she hit the emergency button and there were ten people in the room and it was decided within seconds that I would have an emergency cesarean. They were all very professional but there was a real sense of urgency and when they wheeled me out I looked back at Ro and he was just so scared. My dad is a doctor so I trust the system, I knew I was in the right place but I also knew that I wasn’t going to be awake for the birth and Ro would just be waiting; it was really traumatic for him. As we got closer to theatre the doctors were introducing themselves to me as we rushed along the corridors and once we were in theatre they put the mask on me and I fell asleep. Ro was standing outside the theatre when Arlo was born distressed and screaming but then he was asked to go back to the room and he didn’t know what was happening so it was really awful for him. Arlo didn’t have great apgar scores – 2 and 6 – and needed help with breathing so he went straight to NICU.
“When I woke they wheeled my bed into NICU and placed Arlo on my pillow and he just stared straight into my eyes. To this day he has the most arresting, engaging eyes.”
Mel spent the next few days in a private room on the ward recovering and was able to go down to the NICU to see Arlo by day three. The doctors had already started discussing the possibility of brain damage and yet he was doing really well; he was engaged and alert but in the back of everyone’s minds was the reality of what had happened shortly before birth. An MRI showed that there was damage to the motor section of Arlo’s brain and they were told that the worst case scenario was cerebral palsy although Mel and Ro were convinced that he was fine.
“He would have been a stillborn if we hadn’t been connected to that machine in the hospital and watching it at that moment. I describe his birth as a rescue mission if anything else. We spent a week in NICU and I actually have really fond memories of that time, it was special.”
While Mel and Ro remained positive once home from hospital, they couldn’t deny the fact that Arlo wasn’t reaching his physical milestones and they regularly saw health specialists to track his progress. They received an official cerebral palsy diagnosis at six months.
“The pediatrician beautifully delivered the diagnosis and it was then that we admitted that we couldn’t keep denying it. Cerebral Palsy is a broad diagnosis that covers a range of motor disorders. Arlo is quadraplegic cerebral palsy, so on paper he is non-mobile. He can’t roll or sit or stand, he’s got full range in all his limbs but his brain doesn’t send signals for him to move them which means he also has trouble eating and he is currently non-verbal. He’s learning to speak using an eye-track device that is just amazing.”
Mel admits that she’s really grateful that she didn’t know the extent of his diagnosis early on. It’s been a gradual realisation of what he can and can’t do and it’s allowed her to go with the flow and accept the reality of Arlo’s condition bit by bit.
“I really tend to sweat the small stuff but with big life things I’m ok. That said, I certainly wasn’t positive about this when I first got his diagnosis. Rohan has been the most amazing partner and we have very supportive families. Thankfully the NDIS rolled out just as he was starting to need treatment so he has had full access to everything that will help on his journey and we have appointments daily.
I started seeing a therapist when Arlo was one and she has helped me enormously. Researching and writing the book really fast tracked me to acceptance and everyone I interviewed told me that they knew how I felt but that it would get better, I would be ok.”
During Arlo’s birth the Obstetrician noticed a large lump on Mel’s left ovary and it came back precancerous. Six weeks after birth she went back into hospital to have her left ovary and fallopian tube removed and was advised to complete their family as soon as possible. They fell pregnant easily with Odette (Odie) and yet their fears stayed with them throughout the pregnancy.
“What happened to Arlo was a fluke but once it happens you realise that it actually does happen. The pregnancy wasn’t fun…we were closely monitored and we were treated as high risk, but there were so many moments of panic when they thought her head was growing too big for her body, another when they thought she had a hole in her heart. This time we were having a planned cesarean two weeks before her due date.
“It was clinical and controlled and it feels like they’re foraging around in a shopping bag.They pulled her out and she started crying and went straight on my chest. It was so nice to be awake and experience it.”
Odette had to go to NICU for a few hours because she had trouble breathing but later that day she was transferred back to the ward and Mel and Rohan got to have a typical newborn experience.
“I was a lot more comfortable with Odie and it came more naturally to me. Because I’d had the cesarean I couldn’t lift Arlo so Ro stayed home for six weeks to help. I really enjoyed that time, Arlo would just smile at her as I lay them close together on the bed.
Planned caesarean, Hole in the heart, Fetal movements, Fetal monitoring, Emergency caesarean, NICU, Cerebral palsy
Mel and Ro recently moved to Bowral and she continues to promote her book. It features 50+ interviews with parents of kids with special needs and answers so many questions for people coming to terms with a diagnosis. You can find out more @the_special_book
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