Sarah shares her daughter Sophie's story, in support of the Each Baby Counts project.
My daughter Sophie was born in August 2010. Two hours after my labour began, a CTG trace showed no fetal movement. We later found out that the readings were wrongly classified as severe instead of pathological. At midnight, my waters were broken and the thickest grade of meconium was seen. Although a midwife stayed by my side the entire time despite the unit being busy, no further help was sought.
By 3.30am I was ready to push. Twenty minutes later the emergency button was pressed and the midwife finally summoned help. Placed on my chest Sophie didn’t suckle and was taken to NICU to ‘be warmed up’.
A few hours later at 9am we were transferred together to the postnatal suite. Sophie had no wires, no monitors and was placed in a crib out of sight at the foot of my bed. At 9.20am I asked for my baby, but as my husband passed her to me she turned blue then grey in my arms as a seizure had stopped her breathing. Sophie was taken to NICU and the cooling protocol began. I will never forget standing in that NICU surrounded by a team fighting to keep my full term baby alive; watching her seize over and over, be vented and cooled and being told that due to the delays in delivery she had suffered profound and catastrophic brain damage (hypoxic ischaemic encephalopathy) which she had a 50/50 chance of surviving.
Since that day life with Sophie has been a rollercoaster. The initial prognosis was that Sophie would not walk or talk, and that she would probably lose the ability to see or hear. Sophie’s progress, thanks to the swift intervention of the Doctor who recognised the signs of hypoxia, has been nothing short of remarkable.
Sophie isn't 'obviously' physically disabled although once one spends any time with her at all it is obvious that developmentally she is much younger than her age, and that she finds communicating her thoughts and needs very difficult indeed.
We live with the hidden side of a hypoxic brain injury, and there is very little coordinated support for Sophie or for us as a family. We are flip-flopping between services stretched to their limit, Sophie is seen as coping rather than being given her full opportunity to integrate. There is inadequate understanding of the complexities of a brain injury with services instead applying labels which often ignore other factors. Sophie has made a great deal of progress in communication but continues to experience difficulty in understanding the subtleties of language, her speech is functional and repetitive and so she is becoming increasingly isolated by her peers.
Sophie has difficulty generalising her learning to problem solve in new situations and struggles a great deal to maintain concentration. Sophie has a full time 1-2-1 support in school although her behaviour can at times be difficult to manage, we don’t know how long mainstream will remain accessible to her. Sophie has developed epilepsy, likely after she began having extreme febrile seizures at 6 months, and while her muscle tone has improved her diagnosis of cerebral palsy remains and she struggles to dress or carry out activities needing fine motor skills thus restricting her limited play further.
Since Sophie was born we have had another child, who every day highlights the impact that the brain injury has on Sophie. There is a desperate need to research the long term impacts of poor maternity care on children and their families, including subsequent pregnancies which are fraught with worry and fear as all naivety about pregnancy and delivery evaporates.
We are lucky, we have Sophie and she is a determined, creative and unique child adapting to a world that is not set up to accommodate her; although she didn’t have a 'perfect outcome' she has survived and thrived. I know on that night on that ward an almost fatal mistake was made; one we live with every day. This must stop. Units must reduce hypoxic injuries and save babies lives, too many have been lost.
Sarah has, with other HIE parents, set up ‘the HIE network’, a UK support forum and resource for families dealing with hypoxic brain injuries in the late pregnancy and neonatal period. Currently going from strength to strength the organisation hopes to work with all groups involved with hypoxic babies from prevention to signposting to other organisations as children and families get older.