Gemini's story

Gemini was only a month old when she became ill with meningococcal meningitis shortly after attending a tangi with her parents. Her mother and father describe the difficulty they had in persuading their doctor that Gemini was seriously ill, and speak strongly against allowing people to kiss small babies on the mouth.

Rose:
“Well my sister rang up and told us she was pregnant and if Dave and I wanted to have another baby. And we said yeeeees! That’s how Gemini came to be in our family.

When she was a month old she got meningitis.

It was while we were at the marae, we came up to a tangi. It was the first time she had been out of our arms and handed around and when we got home that night, she was okay but about 5 the next morning she woke us up and we knew something wasn’t quite right. We were a bit concerned about her then. But we thought oh it’s all right, like Dave and I are pretty finicky over her, but we knew something wasn’t quite right because she was — normally when she got up in the morning we just changed her, fed her and she was out again, but she wouldn’t even take her bottle that morning. She wouldn’t eat. Crying a lot. Screamed when we changed her, when we bent her legs up and she was vomiting.

We rang the doctor and they didn’t see us until about 2 o’clock in the afternoon. He couldn’t really say exactly what was wrong with her, to take her home, but if we had any concerns later on we could bring her back. She was still running a high fever. She was projectile vomiting. She still hadn’t eaten. We thought it might have been a tummy ache or something so we gave her water. We took her off the formula and gave her water, and when she brought that up that is when we took her to the hospital. When we got there they checked her out again and said that they couldn’t really tell what was wrong with her. Because we were obviously worried we could stay there the night, which we did, and that was 8 o’clock and at 1 in the morning she fitted.

The next morning both doctors came in and checked her out and they told us that she seemed a lot better than she had the previous day. She wasn’t crying as much. But she had been crying all night”.

Dave:
“We knew everything about her, that month. Like hey you know we took care of her the whole time. We knew her little ways, her little habits, her cries for hungry, her cries for attention, just different cries. It wasn’t the same. This one was different to the rest. She wasn’t right. Her touch wasn’t right. She wasn’t focusing on us. She was just starting to sort of notice shadows and follow us around the room and stuff. None of that was happening. We said yesterday she was screaming and now she is just whimpering. But it was because she had screamed herself out. She only had whimpers left. They ended up saying well they had consulted amongst themselves and then they said for she is improved and for us to take her home.

And the third time we went back to the hospital was because we were looking through our baby Plunket book and it has got a list there of if your baby’s doing… it has got a list there of these things but at the end it has got if your baby is doing only one of these things it should be in hospital. Our baby had been doing about three or four. We knew she was really sick”.

Rose:
“We told them that she wasn’t well, she was very sick. We wanted some tests done and we wanted — we were going to take her to Whangarei. We took her down there in our truck, because we had no other way of taking her down there. They put her on treatment straight away. Fortunately for Gemini it was the right treatment, and they did a lumbar puncture. Gemini was lying on the bed in a dark room, no clothes on and we couldn’t touch her. Well we weren’t allowed to. They said it would be really painful and we couldn’t pick her up and they came in and they said to us well I have got good news and bad news and the good news was they had started her on the right treatment quickly and the bad news was she had meningococcal meningitis. And I didn’t know what that was. I didn’t know what it was at all and then they started to explain it to us and Dave and I — it just blew us away”.

Dave:
“One of the things that the doctor says when we first arrived at Whangarei hospital was you should have been flown down in the helicopter because of how bad she was. Yeah, because if it was the night before we had gone down.. ..”

Rose:
“She might have been all right. It wouldn’t have gotten up to her ears. Like she was a month old, we were her parents, it was our responsibility to take her, because we felt she wasn’t well and she wasn’t, and we did our part and we took her to professionals that were supposed to say okay these are the symptoms that a lot of other illnesses have, but because she is only a month old and she can’t tell us anything we will test her for everything, but they didn’t do that. They just said take her home, give her the Pamol every four hours to reduce her temperature and she will be right sort of attitude.

And when she came out of Intensive Care we didn’t know she was deaf or anything like that. They told us all the stuff that could happen. She may have brain damage, she may lose her hearing, she may be blind, she may have all of those things, but they couldn’t tell just yet. And we were having lunch and we dropped a fork on the floor, one of us did, and the other jumped and she carried on sleeping. Then Dave and I looked at each other and said she didn’t hear that, and so we started going and banging things and clanging things and nothing, so we went out and got the doctor in and they did a test, and they told us she was profoundly deaf in both ears. Mmm. They did a test on her brain to see if there was any wave pattern there from sound and there was nothing, and Dave and I couldn’t believe it. Like we thought she will get it back. You just automatically think it is going to grow back, it is going to be okay, and then they told us”.

Dave:
“You sort of feel like you are betraying your baby though because she was only a month old but looking straight in your eyes. It was really painful going through that time, especially to see your baby going through so much pain and like they explained to us if you take the severest migraine and then times it by 500 times that’s, yeah…”

Rose:
“Well Dave rang through and told the family what had happened and my sister and her husband came through straight away. It was all that guilt too. Like you know, thinking well, we were given this beautiful perfect little baby, entrusted to us by my sister and her family and we had her for a month and then she was fighting for her life in hospital. We helped each other through it. They were feeling exactly the same as we were, you know, no different and she was still their, she was their little girl too. We said we would bring her up. She knows that’s her family as well. So we were all feeling the pain”.

Dave:
“She started going from a normal at one month old, a child starting to get vocal and chirpy and then she ended up still making noises but slowly they faded until she didn’t make no noises.”

Rose:
“We had to learn how to sign. Gemini was — she was awesome but Dave and I had to learn to communicate with her and teach her how to sign. We know Gemini is still lacking in a lot of other, she needs a lot of help.

Dave:
She’s there on her reading side. She misses out on a lot. Like trying to teach her the times tables. There is a lot of hard times yet for her yeah”.

Rose:
“With Te Ngai too when he was born it was at a stage where we were travelling a lot for Gemini. You know we had to take her down to Kelston Deaf, we had to take her to be assessed by so many different people”.

Dave:
“And Te Ngai always had to wait, he always came along with us wherever we went, but Gemini was always the focus”.

Rose:
“Well she was one when they came up and talked to us about cochlear implant. And then finally, after about 18 months, we decided we’d do it. It was our decision and it wasn’t Gemini’s and we had to do the best thing we could for her. But the great thing about it is we have still got her. Sure it’s a disability and all that but she is still a really neat child.

Dave and I are always saying don’t let people kiss your babies on the mouth. Don’t kiss babies on the mouth. Well we have got two children, two boys after Gemini, and I know when that immunisation comes out for meningococcal they will be getting it, because for me a lot of diseases and stuff that children are getting now, they were almost gone. But now they are starting to come back again because parents don’t want to immunise their children. For me it’s really, really important. When Gemini got sick I thought I had been through a lot of other emotional experiences but to actually see your child there fighting for her life. Like we didn’t know whether she was going to live or die until like she came out of intensive care, and there were a couple of really close calls in that time that we almost lost her, and the pain that those babies go through. Like Gemini was screaming and they had taken all those tests…”

Dave:
“Yeah I wouldn’t like to see any child go through what Gemini has gone through and I would definitely make sure my children are immunised. If there was that opportunity for meningococcal …”

Rose:
“I don’t think parents should have to go through that. I don’t think babies should go through that and it’s our responsibility to make sure they don’t. You know it’s parent’s responsibility to make sure their children are safe, don’t catch bugs, and worst of all don’t catch diseases that could be prevented had they been immunised.”

This story has been edited from a videoed interview with Gemini’s parents, Rose and Dave and is posted on IMAC’s website with their consent. The interviewer was Elaine Ellis-Pegler.