11 September 2011
On 3 December 2010, our daughter Ayana Sophia is born after a pregnancy of 37 weeks and 5 days. A little lady weighing 2535 grams, but extremely spirited! Mum is being induced because of the HELLP syndrome.
Fifteen days after her birth, we fall hard from cloud nine. From one moment to the next, our daughter becomes ill, very ill. At 8 pm, she no longer wants to breastfeed. She does drink a bottle. After that, she grunts, does not open her eyes anymore and lets her tongue hang out of her mouth. As parents, you worry, but oh well, she also had a cold. Or could it be intestinal cramps? At 12 o’clock, she doesn’t want to feed at all. When she opens her eyes for a moment, we see that she turns away with her eyes. Enough is enough and we call the out-of-hours GP service at the Zuiderziekenhuis in Rotterdam.
We must come immediately. The road to it is a disaster. It has snowed heavily and we can’t drive fast. On the way, we keep on tapping her little cheek whenever she stops making noise. Arriving at the out-of-hours GP service, we are brought to the waiting room first. Incomprehensible with a baby just two weeks old. When it becomes clear one of the doctors has been called away for an emergency, one of the assistants asks us if we would like to be transferred to the A&E at the Ikazia, also in Rotterdam.
Once there, we have to undress her and wait for the paediatrician, who is on his way, also ploughing through the snow. When we undress her, we notice she sees grey and has red and blue spots all over her body. The paediatrician admits her and suspects RSV, because she had trouble breathing. Once in the ward, treatment with broad-spectrum antibiotics is started. She also gets several tubes and drips, and all the trimmings. The only thing you can do as parents is wait and be mortally afraid.
Because Ayana got ill so quickly, the paediatrician decides to transfer her to the Sophia Children’s Hospital in Rotterdam. We are taken there by ambulance at 4 o’clock. Once there at the neonatal intensive care unit, our hearts sink when we are told that they do not suspect RSV but meningitis. Even more tubes, drips, stickers, and monitors. And eventually also a ventilator because she is so weak. As parents, to see your daughter like that, is not easy. This image will stick with you for a long time. They also took cerebrospinal fluid with a spinal tap. The first 24 hours were incredibly important. If she remained stable, she could survive. Luckily, she remained stable. The seriousness of the situation was clear from the response to the question if everything would be alright. The reply was: “We are doing what we can.”
She was then transferred to an isolated room because it turned out she also had the flu virus. During this admission, she also had seizures, which meant she also received medication for epilepsy for eight months. The cerebrospinal fluid and blood tests show our daughter got meningitis from a Group B streptococcus and sepsis (blood poisoning). Something that is incredibly rare. Contracted from mum in the birth canal. Simply bad luck, the doctors said. What makes it difficult for us to accept is how unfair it is that such a little girl has to go through so much. And the powerlessness of not being able to protect your child from this.
Eventually, Ayana stayed in the intensive care unit for 5 days, where she had seizures again. Then she was transferred to the medium care unit at the Sophia. There, we got the results of the brain tests. It showed she had 10% brain damage on the left frontal lobe. The damage is in the learning and behavioural area. The doctors cannot yet say what the exact effect for her will be. It is also possible other parts of the brain take over. Because the bacteria are encapsulated in her brain, our daughter has to take antibiotics for six weeks.
After 2 weeks at the Sophia, she is transferred to the Ikazia for the remaining 4 weeks of antibiotics. On 3 February, we can finally take her home. A big party at home, also for her 2 big sisters! She is doing very well. Until things go wrong again on 2 May. We recognise the symptoms of meningitis. We get the shock of our lives. We call the paediatrician at the Ikazia and ask if we can come over. At first, it looks like the enterovirus, an innocent virus with similar symptoms to meningitis. But after the spinal tap and blood tests show her inflammation levels in her blood are high once more, they again suspect bacterial meningitis. This also does not happen often: meningitis twice in such a short time.
After a week of antibiotics, we get to take her home again. And once again, we will have to trust that she is completely better now. Little by little, this confidence is growing. Also, because it turns out our daughter is a fighter time and time again. Despite all the pain and misery she has had to endure, she is an incredibly cheerful little lady.
We are under the supervision of the paediatrician and physiotherapist at the Ikazia and the neurologist and audiologist at the Sophia, but we receive good news every time. Ayana (now 9 months old) is developing very well. Fortunately, there seems to be nothing wrong with her hearing either. During our last visit, the neurologist was very positive and thinks Ayana will not have lasting effects. Maybe it is still too early to say, but we are also very positive. She is a very cheerful, spirited and adventurous little lady.
The period in the hospital as well as the uncertain months that followed took a heavy toll on us as parents and on the rest of the family. The uncertainty, seeing your daughter in pain, not having been able to protect your daughter from this misery. It has not been easy. But when we see where we are now with our little lady, we couldn’t be happier. Every now and then, we do have difficult moments whenever we see photos from that period or when someone asks about it. But our daughter mainly brings us many beautiful, happy moments.
Only recently have we dared to read what could have happened and we can only say we’re happy we trusted our intuition twice, so the doctors were able to act in time.
So, our message is twofold:
- Trust your own intuition as a parent and don’t blindly accept when you are being fobbed of;
- Trust a child’s strength. Seeing how our daughter is doing now, we could’ve never dared to hope for this.
Of course, we are not there yet and anything could happen, but we enjoy her every day and she is developing like any other child. We know things could’ve gone differently, but with this story we would like other parents to know that children can be very strong and can overcome this disease.