Cory Claire’s story

After what I thought was a pretty normal 40 weeks and a day pregnancy. Cory Claire was born after 25 hours of labour by emergency C Section. 30 seconds after she was born she started having violent seizures, the doctors started brain cooling almost immediately and put her into a medically induced coma. She had gone into status epilepticus. For the first week of her life, the doctors had her on heavy max levels of sedation but she was still having seizures through all of the medication. In this time she had her first EEG and the doctors were not happy with it at all. On Friday they started treating her with Lidocaine and she had her first seizure-free day, unfortunately, the seizures started up again on Saturday when the Lidocaine was stopped and on the Sunday one of the doctors called us in to talk to us. He told us to start making memories as she was going into organ failure and that her likelihood of survival was about 2% and if she did survive she would be severely cerebral palsy and have major problems. Her attending doctor disagreed and restarted the Lidocaine. Monday the 27th she didn’t have a seizure and started to progress two weeks after she was born. They extubated her taking her off all life support machines and she was doing extremely well. After that, she spent the 20 days in the NICU having minimal seizures but she was not sucking a bottle. We started speech therapy and physio. After a total of 31 long days in the NICU, Cory was moved to the children’s ward where we were allowed to finally stay with her. We spent the next 10 days trying to get her to suckle, unfortunately, she wasn’t drinking more than 20mls at a time and had to be tube-fed the rest. At this time she had had her second EEG and the doctors were very happy as it did not show any seizure activity she also had her first MRI that was all clear. After ten days in the children’s ward with her and no sign of improvement, my husband and I decided to place a PEG tube in her stomach so that we could finally get her home. We were transferred to a hospital in PTA. It turned out to be an absolute nightmare. We were there for four days waiting for her PEG to be placed. Cory suffered a 20-minute seizure due to the doctor not listening to us and changing her medication. While at the hospital they did her second MRI which was also all clear. She had her 3rd EEG which was all clear at the time. Finally, the peg tube was placed and we were able to take her home. We were so happy to have Cory home but it came with a whole new set of problems. Over the next three months, we went from specialist to specialist trying to find answers for our little Cory Claire. In February this year, we saw a pediatric neurologist who was determined to find answers. Cory was admitted to the hospital where she had her 4th EEG and 3rd MRI and a battery of blood tests. Cory’s EEG was all clear with still no sign of seizure activity but her MRI shows that her brain is not growing normally at this point, she also has two minute scars on her cerebellum. We received word on 3rd March that the results of her blood tests were back. Cory was diagnosed with KCNA2. She is now six months old and has developmental delays. We are working closely with her physio, OT, Chiropractor, Body Talk therapists, and speech therapist to help correct her delays. She is currently on B6, Keppra, Epilim, and CBD to keep her seizures under control and hasn’t had any seizures since December. Despite her developmental delays, she is progressing well. She is a smiley happy baby girl who is now drinking all her feeds out of bottles so that We no longer need her PEG tube and are looking at taking it out soon. The KCNA2 diagnosis is very scary as it is such a newly discovered disorder and not much is known, we however remain hopeful and are confident that our little Cory will go from strength to strength.