MACS Message Boards

[teresagordon]

Hi All,

My name is Teresa and I grew up with three older brothers. When I had children the one thing I wanted was a beautiful baby girl. I was blessed with two boys that I love to bits but felt that I missed out on having the one thing I always dreamed of. In 2007 I unexpectedly fell pregnant again and when it came time to find out I was desperate to know whether my wish was to come true. I was granted my beautiful baby girl.
Kara was born 5.06.08 at Darent Valley Hospital in Dartford. She was born by C section three weeks early. I had my dream. Pink at last! The sheer pleasure was soon to be knocked out of me.

After Kara was born I noticed that she would not open her eyes. I also noticed that the right eye was very swollen. I was told that it was probably because of the delivery even though I had a section. I knew though there was something wrong.
When the doctors examined her I told them of my concerns. She said she would reassess the following day. She finally agreed and asked her senior doctor to take a look who said he was unsure and asked the consultant to see her. Finally after 3 days of not knowing they agreed that something was wrong. My heart sank at this point as my world had been turned upside down. My beautiful baby girl was not perfect.

It was ten weeks before I got to see a consultant at Queen Marys Hospital in Sidcup. They are our local eye specialists. By this stage I was beside myself not knowing.
It was confirmed that she had Microapthalmia with a dense cataract and nothing could be done for her (later we learned that there would have been a six week window where an operation may have at least let her see out of her right eye but, by then, it was too late). I sobbed, not fully understanding the meaning of it all. She was treated by our local hospital as a bit of a showcase. The consultant had med students with him and thought it was wonderful that he could show his students such a rare condition. I was both heartbroken and livid at the same time. At the end of our appointment I grabbed our beautiful baby girl and run out of the hospital sobbing. They had made me feel that it was my entire fault that Kara had these conditions.

They referred us to Great Ormond Street who were wonderful. When we finally got our appointment I had been through a rollercoaster of emotions. I would sit and watch Kara at home and just sob. The questions would pile up. Could she see anything? Would she see anything? Would she do all the things my boys had done? Would she walk? Would she…the list went on and on. I can still picture myself doing this. Lynda and Macs was my life line. The first time I phoned Lynda I could hardly talk I had been sitting at home slowly sending myself mad. Lynda kept me sane.

Great Ormond Street Hospital explained after several tests that she had no vision in the right eye and that they recommended a prosthetic eye shell…we were horrified. The first thing that entered my mind was that only people who had accidents needed something false or war zone people with bomb blasts. Why did our baby girl need such drastic measures? How do I explain to my boys that their sister wasn’t perfect?
Gosh then referred us to Moorfields.

At six months Kara got her first clear eye shell (it is like a large contact lens which feels similar to a small sea shell but smooth on both sides). I was terrible. It was December and I remember thinking everyone else gets dolls for Christmas…we got a new eye. But after we came out of the appointment I remember a sense of relief that we now knew what we were dealing with and felt we could move on.

The prosthetic people at Moorfileds were wonderful, from fear and anxiety, they made us feel relaxed and positive. Going through the drawers of used eye shells in order to get a colour match even felt like fun.

Kara got her first coloured eye in January and we have not looked back. The thought of having to put the eye shell in and take it out (you are given little suction pads that fix on the shell in order to pop it out) was really scary but, after a few times, you get more confident. And Kara is amazing, a few times screaming, then a few times moaning and now, at just one year old, she more or less just lies back and just lets you get on with it.

The best thing that has come out of this is that we have a whole new family with MACS and from going to the AGM can see that, just because she has one good eye, it does NOT have to stop her trying anything.

The worst thing about all of this is that I feel we lost a whole six months of her life with all the trauma of it. I also regret not having any professional photos done of her. My niece asked me today at Kara’s first birthday where her baby pictures were and I said all but one was on the PC. I felt ashamed but, at the time, I didn’t want the questions as I had no answers.

We have moved on. Kara has been walking since ten months. Tries to climb onto and up anything she possibly can and is a real pickle at times. As her mum, I know how important it is for her to explore like any other child would. I have to stop myself at times trying to hold her back. I know that our little girl is wonderful and full of spirit and sheer determination.

We will encourage all three of our children in what ever path they take and nothing will give us greater pleasure than to watch our children succeed in whatever is thrown at them in life.

We know this is a life long rollercoaster and we have many hurdles to cross. We know that it is not always going to be easy but are inspired by all the families we met at the MACS AGM and, because of this, I have agreed to be part of the Regional Support Team. I will be your contact for London. My husband has also been inspired and is in training to run the London Marathon next year on behalf of MACS….even though he has never even run for a bus.

Thank you to everyone at MACS who have made our lives so much easier by telling us your stories. Each time we make contact with people you seem to learn that little bit more in this ongoing journey.

Teresa & Mel Gordon

[Claire]

Hi Teresa,

Thank you for sharing Kara's story with us. It makes me upset to hear what a rough time you had when Kara was initially diagnosed, especially as these are also my local hospitals. Fortunately my son, George, was born at St. Thomas' and we had specialists on hand within days who all treated us with a great deal of compassion. George has bilateral anophthalmia, which came as a complete shock to us but it doesn't seem to hold him back as he is a smiley and happy baby.

I only live in Sidcup so would love to meet up with you at some point. George is only 5.5 months so fairly similar in age to Kara so they may become buddies in the future.

All the best

Claire
xx

[teresagordon]

Hi Claire
Love to meet up soon. If we dont make a date straight away I am always running around for one of the kids or local playschool or scout group!
End of term is always busy.
Are you going to the Southend day?
I will send a private message to give you my details and give me a ring and we will meet.

T