My daughter had meningitis

When Esther from Babyccino told me they would run a story about meningitis and septicaemia I felt so grateful. I know that it is not the kind of stuff we normally read about in the fabulous blogs that I love so much; meningitis and septicaemia are ugly and not something we like to think about, but never the less – simply knowing the symptoms helps to save lives from this horrible disease. That, and a mother’s instinct!

My daughter battled the disease when she was nearly 7 months old…
One day, on a casual lunch out with a friend and her baby, Miko didn’t seem well. I took her home immediately. She was crying, her temperature went up and there was nothing I could do to comfort her. I took her to my GP who sent us to A&E (Accident & Emergency), simply as she put it “to rule things out”. They looked at her in A&E. They gave her paracetamol and let us stay in a room while they were running tests on blood and urine and they kept an eye on us for a couple of hours. In the end Miko seemed a lot better and they sent us home with an appointment for the next morning.

Miko got worse during the night, and we did our best to comfort her in our bed. In the morning we went back to the A&E way before we had our appointment because we were simply not happy with her. She was crying in a way that I’ve not heard her cry since, and she continued to run a temperature.
Of course everybody will tell you that babies cry, and who hasn’t heard stories about high temperatures in babies that proved to be harmless? But my instinct was telling me that something wasn’t right, and thank God I was listening.

Miko was very ill. We were sitting in the waiting room of the A&E unit when a nurse came to listen to her heart, and from that second it all became a blur of doctors and nurses, orders being shouted out, medication and what seemed like 100 beeping machines attached to my baby. As a parent standing on the side it felt as if my child had been robbed away from me. While the doctors do whatever it takes to save the child, you feel useless, helpless and your heart is being crushed into a million pieces.
Miko slept for 3 days without waking up. Doctors came in and pinched her nails but she would not react. They looked at her eyes with torches. They asked question about if she recognized us when she woke up, but she hadn’t been awake at all.
At night I was sleeping next to her on 2 chairs and my husband went home to what must have seemed a very empty flat.
After 3 days she was diagnosed with meningococcal B septicaemia. The treatment worked like a miracle and after 6 nights in hospital we were discharged, relieved and happy! Ready to put the trauma behind us.

For 2 days we still went to the ward every day for injections and felt reassured to have doctors seeing her every day. We also still made visits to the emergency room every day, as we simply didn’t feel that she was a 100% okay. (It was expected that she would be uncomfortable after the septicaemia, but there was no other visible urgency to see her.)

At this point both my husband and I were out-of-this-world exhausted. That night Simon went to bed early with Miko and I tried to relax in front of the TV with some knitting. Little did I know that the nightmare was only to begin.
MeningitisAt 9.30pm I heard my husband shout to me: “We need to get back to hospital now! Call an ambulance!” and he came out of the bedroom with Miko in his arms, her whole body was fitting and there was foam around her mouth. I called the alarm number and screamed down the phone, and even though they were with us within a couple of minutes it seemed so long that I called them again. The doctor threw an oxygen mask on her face and we ran down the stairs to the ambulance and came back to A&E where a whole team was already waiting. Her seizure was impossible to stop, and after an hour of her fitting they had to put her in an induced coma which would stop the seizure. They did that in the theatre (operation room) and sent us away for the procedure. When we saw her again she was in a coma with so many lines going into her that they were impossible to count. But the thing that hit me the hardest was the tube down her throat that was taking care of her breathing and her mouth that was taped over so you couldn’t see her lips.
(Pictured: Miko after a seizure)

It was 3 in the morning and we now had to be moved to another hospital.
She was in the coma for 28 hours and then they gently took her out of it. She suffered more seizures, but apart from that she slowly started to get better. They found out that her septicaemia (blood poisoning) had spread to her spinal fluids and she also had meningitis. We became hospital veterans and soon started to use medical language when communicating with doctors and nurses.
After staying in the specialist hospital for 2 weeks, followed by another 2 weeks in our local hospital, walking out of the hospital with our healthy and happy girl was an amazing moment. We had made it and could start returning to normal again. Something we craved!

Miko blueberriesAfter the very long stay in hospital, Miko was initially a late developer compared to her peers, but she picked up after a couple of months out of hospital. Today she is the picture of health. She is strong, she is happy, keen to learn and has lots of friends. And not a day goes by where I don’t think about how lucky we are to have her alive! We could have lost her, she could have been brain damaged, lost her hearing or even her limbs. But she didn’t!
(Pictured: A healthy Miko eating blueberries)

Miko never had the rash that most of us think of as proof of the disease. All her other symptoms could have been brushed off as other things, because the symptoms for meningitis are so similar to many other totally harmless illnesses. Small babies and kids cannot communicate how they feel and as a parent, carer and doctor you have to guess.
It’s important to remember that this disease moves fast, and what seems like a slightly uncomfortable child one minute can be a seriously ill child the next. So don’t leave your child unattended when showing any of the symptoms of meningitis. And don’t be afraid to go back to the doctor or A&E if you feel you need reassurance. You are the parent and you know your child best.

I urge you to learn the symptoms by heart and to inform the people around you about them as well. Visit www.meningitis.org and study the symptoms.
Miko got the help she needed just before it got more serious. Who knows what would have happened if she had gotten help 10 minutes later or even an hour later. Meningitis is easy to treat and most people make a good recovery if discovered in time; its all about knowing the symptoms.
I hope you will never need the information you gather now about meningitis, but spend a few minutes to familiarize your self so you can act quickly in the case that someone you know shows the symptoms.

Thank you for listening to my family’s story!

-Mette

(Note from the Babyccino girls: Thank you so much Mette for sharing your story with us and our readers. We are so happy Miko fully recovered from this awful disease! We feel we got to know you personally, and want to give both you and Miko a big -virtual- hug!!!)

7 COMMENTS - Add your own

1. Natalie | September 17, 2008 | Reply

Wow! Thank you for sharing such a personal story. I had tears in my eyes. I can’t imagine what I would be like in the same situation with my daughter and I admire your strength. I’ve not personally known a baby who has experienced this, but one of my best friends had it and was in hospital for several weeks and unfortunately a childhood friend died from it. Thankfully with weeks like this and the way the NHS is trying to educate people, we are far more aware than ever. But it is no substitute for your instincts and I’m so pleased you stuck with them because doctors and hospitals have a habit of palming us off. Oh and Miko is gorgeous :-)

2. Stephanie | September 17, 2008 | Reply

Thank you for sharing this story. It really resonates and I’m certainly going to learn the symptoms. Zoé is one year old now but I remember her at 7 months. It must have been so terrible for you. I really feel for you and I was putting myself in your place. As a mother, there’s nothing more terrible than seeing your child being sick. I am so pleased that Miko is doing great and had no sequels. I wish all your family a happy and healthy life

3. Steph | September 17, 2008 | Reply

What a horrific experience to go through. I’m so so so glad your baby girl is a picture of health now.

4. Courtney | September 17, 2008 | Reply

I can’t even imagine going through all of this. It’s heart-wrenching! Thank you, Mette, for sharing your story and for helping others to understand the reality of this illness!

5. Emilie | September 17, 2008 | Reply

I can only imagine what this must have felt like and your poor little girl. It is a real wake up call to read this and makes me happy for every moment I have with my kids. I am so glad that your story had a happy ending.

6. Michela | September 18, 2008 | Reply

yesterday I got home and my 9 old months was screaming and screaming, she had pinpricks on her face….so I obviously feared the worse. We diligently did the glass test and thank god they disappeared. It turns out it’s JUST ear inflammation, not even infection yet!!!

7. Mette | September 19, 2008 | Reply

Thank you very much for the comments! It really warms me and I am so pleased that you now know more about the desease so you can react! It was such a horrific experience, and we were lucky and now it just feels great to be able pass on knowlegde on the desease. I was great to share with your lovely lot! Lots of Love from Miko, Mette and Simon

LEAVE A COMMENT