Tallulah was born in March 2013, the first child to Emily and Dan, my sister and brother in law. The pregnancy, whilst having some niggles, was like most and relatively straight forward, the birth a little different and resulted in baby being delivered by forceps, but at last a beautiful baby girl arrived, giving the reassuring cry that all parents want to hear.
She was, as is every new baby, adorable, such soft skin and a fantastic sleeper too, a bit too good and was kept in hospital for a week with her mum as feeding was a bit tricky, maybe the first clue that T was a bit different, however mum and baby persevered and finally got to come home calling in to see us, so cousins could be introduced, a tearful experience.
Other subtle differences in Tallulah were noticed, more so by her mum, off to the doctors for her 6 weeks check, all seemed well.
Emily called me one day and said she thought T looked like she was having spasms, she spoke to the health visitor and GP but both linked the spasms to reflux and didn’t seem overly concerned. After Emily and Dan witnessed their daughter having several ‘seizures’ they took her to A&E where a nurse also witnessed the same and T was rushed straight into resus; she was put on oxygen and sedated. The agony of waiting and not knowing whilst T was given an MRI to check for meningitis, amongst other things, but nothing showed up. Tallulah was finally admitted to McGregor Ward and more tests continued. Warwick consulted with Birmingham Children's Hospital, who were more specialist. An ECG followed which was where the abnormal electrical activity was noticed (grossly abnormal in both hemispheres – burst suppression) the family soon discovered that Tallulah’s epilepsy was not ‘run of the mill’ and that she would be on medication for the rest of her life with learning difficulties and disabilities, highly likely to have a short life expectancy. No one wanted to believe it, it was so hard to take in, this new little baby already faced with so much struggle.
This was not how it was meant to be, all were sent home from Warwick after a week of trying different medication combinations. The medications didn’t work as hoped and little Tallulah was readmitted to Warwick to be monitored whilst a bed became available at BCH. Tallulah was 9 weeks old.
A bed became available and off they went to BCH, still feeling numb to these raw, new emotions nobody ever wants to feel, least of all a new parent with their precious bundle, into a bigger more overwhelming environment with other patients and families facing their own personal struggle.
Test after test after test, emotional rollercoasters for weeks and weeks, a stressful time which broke us all mentally but pulled us together emotionally and physically. Eventually, Tallulah was heavily sedated and hit with further more complex tests and investigations to find out what was causing the seizures, the Dr’s trialed different combinations of epilepsy medication, steroids and various other drugs to try and find the right combination to work for her. Nothing was 100% successful.
We waited, we were told she was very poorly, Emily and Dan were told to go home and get some rest, the torture and guilt that they felt leaving their precious two month old baby so unwell was too much to bear. Emily showed me a video of T in hospital having a seizure, I couldn't do anything other than weep, I crumpled, their daughter, my first niece, so little and helpless in a hospital bed and there was nothing we could do to help. Finally Emily and Dan were offered onsite accommodation at Ronald McDonald house where parents can go get rest and food in a home from home environment but are close by their children 24 hours a day.
The staff, Dr’s and nurses all showed an enormous amount of empathy, compassion and understanding with a wealth of knowledge in their field, Emily remembered, “Staff were great. Nurses, as usual, are stretched too far but were always lovely, especially the High Dependency Unit. We would have been totally lost without the Ronald McDonald House that was a huge weight off our shoulders. We hated leaving her at night but we needed our rest and so it was such a relief for both of us to be so close to her 24 hours a day.”
Tallulah was in Birmingham Children’s Hospital until July 2013, just before being discharged she was diagnosed with Otahara Syndrome (Early Infantile Epileptic Encephalopathy) a very rare epilepsy syndrome where seizures start before three months of age, seizures are intractable, babies are very floppy and excessively sleepy and often have difficulty feeding, amongst other symptoms.
Tallulah has severe global developmental delay and her ability is roughly that of a newborn (between 1-4 months). After initially being fed via a nasal gastric tube she is now solely fed via a gastrostomy and has been on a ketogenic diet for the last three years. Tallulah has very low muscle tone, she is currently under the care of Ketogenic dieticians and Dr Philip and Dr Agrawal at Birmingham Children’s Hospital and will continue to be as she undertakes regular check ups and visits to the hospital.
Tallulah is now 4 years old and is amazing, all medical professional comments are along the lines of, “this is Tallulah and its Tallulah’s illness and she is doing fantastically well considering the initial prognosis.”
It’s not all plain sailing and the road is a bumpy one with many obstacles along the way but as a wise person once said “ it’s not about the destination but the journey” and everyday is a blessing.
Tallulah attends Welcome Hills Nursery and will begin school there in September 2017, where she will continue to be stimulated and challenged in a way that is good for her and every time we see a glimmer of a smile, a response to music or touch it fills us with joy and a heart that could burst out of your chest, she’s a trooper and her parents are amazing.
This is such a brief, ‘in a nutshell’ story and really doesn’t go anywhere near close just how fundamental the support and care provided by BCH was and is at all but thank you Birmingham Children’s Hospital and the NHS for supporting a child and their family at such a challenging time and thank you Networking Mummies UK for supporting such a crucial and worthwhile cause.