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At 34 weeks pregnant I had a placenta abruption. I lost alot of blood and was rushed to hospital. Our baby was delivered by an emergency caesarian section. The next hour was the most traumatic and horrifying experience. Katie had no heartbeat, and was unable to breathe by herself. At 18minutes after delivery the doctors finally got a hearbeat but they were breathing for her. We were told that our baby daughter had been starved of oxygen for approximately 45 minutes and had suffered severe brain damage. She was fighting for her life. After a few hard days Katie was able to breathe on her own but she was diagnosed with cerebal palsy and was having epileptic seizures. The weeks following had many ups and downs, but at 2 months old we were able to go home together. Unfortunatley, Katie has spent most of her time back in hospital. Medication Katie now needs to take;
Side effects of these drugs have been debilitating for Katie they include hair loss, withdrawals, constant state of sedation, stomach cramps, irritability, muscle spasms. Raised blood pressure, acne, increased risk of infection, increase in appetite, weight gain, increased body hair, drooling, dizziness, light-headedness, slurred speech, clumsiness, unsteadiness, trembling hands, nausea, vomiting, and diarrhoea. Jan 07 due to cerebal palsy and increased seizure activity Katie's feeding detierated, she was refluxing into her lungs which was potentially life threatening. An N.G (Nasal Gastric) tube had to be inserted into Katie's stomach and more medication to decrease the acid. Complications of this can be: blocking of tube, bacterial contamination and developmental delay. Prolonged NG feeding can lead to development delay in relation to oral skills such as sucking and swallowing and speech development can be affected. Incorrect feed calculation is also a very dangerous mistake that can be made while using this method. If the seizures continue the chances of Katie being able to feed orally will be dramatically reduced. Katie returns home once again Following Re-Admittance to Antrim Hospital in March due to increased seizure activity a repeat EEG was taken… the results were inconclusive. We were then waiting for the Royal Hospital for Sick Children to agree admission. After weeks of anticipation we got Katie admitted on the 28 th of April. Over the next few days they carried out yet another EEG, this time diagnosing in-tractable epilepsy the worst outcome we could have got. Being told this devastated us. They are not expecting to get control of katie's condition. We can only live in hope! After watching Katie rapidly deteriorate and many discussions with doctors, Katie was administered a drug called Acthar gel (steroid treatment) www.webmd.com/drugs/drug-53490-Acthar+H.P.+Inj.aspx?drugid=53490&drugname=Acthar+H.P.+ Inj &pagenumber=4 via injection given on alternative days, over the next fifteen days. This drug is used for reducing inflammation to give the brain a chance to develop. It is only a short term fix as it reduces the immune system and leaves Katie open to catching any infections. This can be fatal. Katie once again has returned home although still seizuring. While on the steroid treatment, Katie was referred to the eye specialist as we were aware that she was not focusing. The results of these tests showed that Katie's eyes were perfectly formed, and there was a signal getting through to the back of the brain. While we have been told that Katie won't be able to see, we strongly believe that if the epilepsy was under control her brain would be given a chance to develop enough for her to have limited sight. We believe our fight to get Katie to America is her only chance. We have other children at home, so our decision has not been taken lightly. As any parents know there are no boundaries with the health of your child. Chicago Memorial Children's Hospital is the foremost epilepsy neuro-imaging and treatment centre in the world. It is the difference between night and day when compared to what we have available here. It has a MRI unit and medical resources with 15 paediatric epiloptologist at their disposal, compared to only 2 paediatric neurologists at the Royal Belfast. Also Available to us in America is a 3T mesler scanner. It is powered by a 3-testa magnet. This high performance scanner is significantly more sensitive than other scanners. The extra scanners allow MRI scan images to be sharper, allowing the structures in the brain to be seen in more detail. Compared to the conventional scanner which is only available to Katie in the UK. The scanner allows physicians to non-invasively conduct “brain mapping” allowing doctors to analyse every last fibre of the brain, breaking it down into one-millimetre sections. It is one of the best diagnostic tools to assess a child like Katie with wide ranging neurological disorders. We will then know the full extent of Katie's medical needs and can get the appropriate help. Then we can make a brighter future for Katie. This type of care is priceless to our baby which is why we need all your help ito raise as much money as we can to get Katie to Chicago and get her the proper help and care she urgently needs. Please contact us if you can help us, either for a fundraiser, a donation or any information. Thank-you, Mekila, Gary and Katie.
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