Wednesday, 25 February 2015

Congenital Heart Defects - The Diagnosis

It was an agonising two weeks, knowing something was wrong with Baby T's heart but not knowing what. The wait for a diagnosis and prognosis was right up there among the most difficult times of my life.

Last Thursday, we spent the afternoon attending the Fetal Medicine Unit (FMU) at a hospital an hour away from home. Boy was nervous about driving there - it's a big city and he doesn't like driving around new, unfamiliar places. We made it unscathed though, and even had time to call in at one of the branches of Costa Coffee in the hospital before our appointment - so I finally got my first Costa of 2015!

First of all, a midwife took us into a consultation room to explain what would happen, and then we went into the scanning room with three specialists, who were all looking at different aspects of the anatomy. Baby T, as usual, was wriggling and fidgeting away and made things a little more tricky, but they did manage to see what they needed to in order to make a diagnosis. We then went back into the consultation room to discuss the results.

Baby T has been diagnosed with Tetralogy of Fallot, which is perhaps best explained in this extract from a leaflet produced by the British Heart Foundation.

So what does this mean for baby, and for us? Well, there is a risk of chromosomal abnormalities in conjunction with this, and we have been offered an amniocentesis to check whether this is the case. From now until delivery, I will have regular appointments with the fetal cardiologist to monitor how things are progressing. Baby T will need open heart surgery very early on in their little life, and we intend to arrange a tour of the paediatric cardiac unit in the next few weeks so that we've got more of an idea of what will happen when the time comes. The success rate of the surgery required is very high, so we feel optimistic that Baby T has a bright future ahead - and we will do absolutely anything we can to help this become a reality.

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  1. They have come so far with all the heart stuff & I know at least two people that were born with heart issues & they both are well into their twenties & one actually just had a baby of her own about a year ago. I'm glad that you are gathering all the info & being taken care of by the doctors. :)

    Mandie ~

  2. One of my good friends is dealing with the same thing. His daughter was born with something similar. She just got done with her second open heart surgery and everything was great. Science has come along.

  3. Oh my dear, You are in my prayers always and I will continue to pray for good things with your sweet baby's heart!!

  4. I know the diagnosis came as a huge shock and that knowing your precious one needs this surgery will be so hard and more so when the time comes. It seems like there is so much difficult waiting time in between prognoses. All that said, I am glad you are so positive. This is going to be tough and it doesn't seem right for a little one to face such a huge challenge so early on but I still have good feelings for all of you. I still feel as though you guys will rise to meet this challenge and then life will be amazing - better than - for all three of you xxx

  5. I can only imagine how heartbreaking this must have been to receive this news to know your little one will need surgery right away. Please know you are all in my prayers.


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