Hi. My wife and I just found during her 20 week’s ultrasound that our baby has a severe case of Ebstein’s Anomaly. One surprising thing that the doctor mentioned and seems to be our only hope left is that the her blood flow is close to normal despite this severity.
We are seeking advise of those who have gone through this and especially if anyone can share if they had a similar case to ours on what to look out for and can share their story we would very much appreciate it. Thanks for reading and sharing.

 

Our story so far

24/04/13

Leanne (wife) went in to labour early hours Wednesday 27/03/13, every thing going to plan.

At 9.45 am we had a little girl by water birth, we named her Minnie, no issues all going well, leanne asked if we would be able to leave that day rather than stay one night and the midwife told us as long as everything’s fine they could turn us round in 6 hours (Harrogate hospital).

We had a lovely time with Minnie and she was feeding and all looked well and we were packed cleaned and ready to leave, when the paediatric nurse  came to check her and then told us she could hear a small heart murmur, probably nothing to worry about.

they took her to the special care unit where things started to go wrong, shlas tarted going blue and there was a big panic, wires, tubes, monitors all came in the room and then she turned back pink.

A cardiologist came to take a look, did some checks made some phone calls and then told us that Minnie need to go to Leeds general hospital NOW, so I asked why and he just said she has a very serious heart condition.

On arrival at the LGI she was already having an echocardiagram, the when finished the cardiologisstat us down and told us Minnie has ebsteins anomoly and that is was very rare.

In harrogate her stats were in the low 60s they gave her prostin to get it up, in Leeds they took her off the prostin and told us they needed to see where she was by her self, as her pulanary pressure dropped and 4 days in HDU passed, her stats were stable at high 80s.

6 days after she was born they have let us home, told us what to look out for and basically see how she goes, I asked them how bad her EB is and they said that her valve was very low down and was leaking quite badly ( so not good ) but they don’t want to see her for 4 weeks .

So me and Leanne are very scared and don’t know what to do, they seem to be saying take her home and wait for her to get worse And then we will see what to do about it as every EB is different ????

is this right???

do we do nothing????

or do we act now?????

and if so what would be our next course of action??

thanks for reading

 

Lee Johnson