Tia Elise, Our second child was born 12 days overdue on 29th December 2004 after a textbook pregnancy. I remember so well the midwifes words after she was born “She’s perfect”. We thought so too & her brother certainly did when he met her later that day.

In the early hours of the morning, after having fed her for the 4th time in just over 12 hours (she was a hungry baby), she seemed a little unsettled to me, I just felt something wasnt right.

I decided to take her to a midwife for reassurance. There was nothing apparent & she soon settled. After having talked for a while about delivery etc the midwife thought Tia maybe now looked a little cold & was flaring her nostrils slightly.

It was suggested her temperature be taken, this was a little low. They felt maybe she had a cold/viral infection & a paediatrician was called for a second opinion. He found she had a slight heart murmur, but I was told not to worry asthis was common in babies/young children and they are usually innocent (I knew this to be true as our older child was diagnosed with one at 6wks old).

I was offered a choice of keeping her with me on a heat pad & a touch of oxygen or to send her to S.C.B.U where they could investigate just what was going on & get her warm quicker. I opted for the latter & was told they would settle her in an incubator & come back for me.

I was asked if I wanted to call my husband, i decided to wait until we knew more. It was around 4.45am & i knew he would worry.

Around an hour later I was beginning to get restless, it didnt take this long to settle a baby in an incubator surely? Then i heard footsteps coming along the corridor, lots of them & hushed voices. Instinctively I knew something was wrong.

Two doctors & a midwife came to me, the male doctor began to speak. They had some bad news about my daughter. He took my hand as he said “its the worst possible news, Im so sorry”.  That was the moment my world fell apart.

They said they’d had no idea she was so seriously ill, she showed no signs, her heart had failed & they’d tried to resucitate. She was just under 15 hours old.

We had no choice, a post mortem had to be performed. It showed that Tia was taken from us by Ebsteins. Its something I will struggle with for the rest of my life. We were told the coroner despite his years of experience had never ever seen it & had to search through books in order to give what he found a name. How then can I fully believe that she would of been inoperable? How can someone who had never seen Ebsteins  say there would of been no hope? Maybe, if Ebsteins had been detected in utero she would of had a chance at life.. We will never know.

The ignorance here in the U.K is so very wrong, we were told Ebsteins is so rare, it affects so few people that so little was known & no research was likely. I know of several other families devastated by Ebsteins & it doesnt help any to be told were the minority.