Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Wednesday 13 July 2011

30 June 2011 - Fetal surgery

A huge thank you to you all for all your thoughts and prayers over the last few days and for surrounding our little one in so much love and prayer. The surgery has been carried out, Jessica is still wriggling away and we are now back home. It has been a very eventful few days and our overwhelming feeling right now is sheer thankfulness that we have got through this stage of our journey - God has really been amazing to us during this time.

When we were prepped for the surgery on Tuesday evening, we had a revised estimate of the risk to Jessica during the procedure and the risk that was given was 10-50% which was a bit higher than we'd anticipated. The plan was to pass a needle into one of the veins leading into the heart and then guide a wire through this vessel which would eventually go into the heart and then cross the right atrium with the wire and increase the size of the hole (called the foramen ovale) between the two atria by inflating a balloon (also inserted through the needle). This was felt to be safer than passing the needle directly into the right atrium (which is how this surgery has been performed in Boston). Blood would also be taken from the cord for genetic screening (a procedure called a cordcentesis). Louise was injected with local anaesthetic to numb the area, and Jessica was anaesthetised through injecting anaesthetic into the umbilical cord. Whilst they managed to get the blood for the cordcentesis (despite Jessica's best attempts to keep kicking the needle out before she was anaesthetised!), she wasn't in the best position to get the needle in and despite a couple of attempts they couldn't see clearly enough to try and insert the needle into the heart, the medical team decided it would be best to stop the procedure and reattempt it on Wednesday when hopefully Jessica would be in a better position. A few hours after the surgery she began hiccupping and moving again as she woke up.

Fortunately she seemed to have coped well with the attempts to pass the needle into her heart and after a scan on Wednesday morning to confirm that she was fine, the surgery was attempted again yesterday (Wednesday) evening. Jessica was in a similar position. The anasthesia process was fairly quick this time but after trying for over an hour to get the needle into the umbilical cord, it was looking as though the surgery was about to be abandoned again. The one time they were able to get the needle in to the vein, the angle wasn't right to get the wire threaded through successfully. The team then decided to attempt going straight into the heart and on the second attempt were able to get the wire across the atrium to the hole and successfully inflated the ballon several times in the hole to enlarge it and successfully removed all the equipment without too much associated trauma. Apart from having a brief period of tachycardia (raised heart rate) Jessica seemed to cope well with it and the scan immediately after the procedure suggested that the hole had been succcessfully enlarged although it was unclear whether there had been much effect on the blood flow. 

We had a scan this morning and there is increased blood flow through the foramen ovale and blood flow through one of the pulmonary veins also seems to have improved. It is still very early days to tell whether it will improve Jessica's odds for surgery post-birth but at least we now know that we have tried everything possible to give our little girl a chance.

There is a still an increased risk of pre-term labour (approx 5-10%) - Louise had a few contractions during the procedure and a couple afterwards but these seem to have eased off so hopefully Jessica will stay put until September! She must continue to be much nearer term before birth to have any chance of active treatment after birth.

The initial results on the cordcentesis have shown that things like Down's syndrome, Turner's syndrome and Edward's syndrome can be ruled out although it will be a few days before we get the full results as to whether there are any chromosomal abnormalities and we are continuing to pray that this comes back normal.

Louise is a little bruised (her bump looks like a pin cushion!) but is feeling well. We have had fabulous care at John Radcliffe over the past few days and just can't thank the medical team enough for having the skills and determination to carry out such a new and complicated procedure and giving our little girl a chance. We were very fortunate that the optimum time for this type of surgery happened to be when one of the key people who is on sabbatical in Arizona happened to be in Oxford this week and another member of the team who is also on sabbatical in Sydney happened to be here this week as well. There were 7 consultants in total taking part in the surgery.

Obviously we still have quite a journey ahead of us but we now have some hope and we will keep you updated as to how things go over the coming months. Thank you all once again for keeping us in your thoughts and prayers - the support we have had has meant so much to us.


  1. It must be always at the back of your mind knowing surgery is always around the corner. I know I feel like that with my son, but hopefully he will only need one corrective operation. Well done for being so strong and being brave enough to share your story. Its always nice to know you're not alone with CHD children.

    1. Thank you - I think the possibility of future surgery being necessary is something that is always at the back of every CHD parent's mind isn't it? Always lovely to get to know other CHD families and know that we are not alone on this journey. Hope your son is doing well now x