17 June 2011 - A ray of hope

Since our appointment at Great Ormond Street Hospital, we have been praying for some hope for our little girl and it seems that our prayers may be being answered. The consultant at Great Ormond Street made it clear that Jessica wouldn't be a suitable candidate for surgery after birth due to constriction in the blood vessels from the lungs and increased pressure in the left atrium in the heart. This is causing the walls to thicken and the high back pressure to be maintained. This would be irreversible and for the surgery to be successful she needs to have low pressure in the blood from the lungs as it ultimately would not be pumped through the lungs.

However, whilst explaining the situation, the consultant mentioned in passing that there is a team in at Boston, USA that are pioneering in-utero fetal surgery for various cardiac conditions but that it's not something done in the UK and he was fairly dismissive of it.

Whilst coming to terms with the news from the appointment, over the next two weeks we thought about the off-hand comment about Boston and felt that we should research the subject and explore every option. We found the website for the team at Children's Hospital, Boston and details of their research and experiences and they have been able to perform a variety of fetal surgeries for different conditions with moderate success.


We spoke to our consultants at Oxford about this possibility and they knew of the team and their work. They agreed to speak to them about our case. The opinion of our team now is that the increased pressure in the heart carries a significant risk that Jessica's heart may fail before she reaches full term so we may not even have her for the short time we were expecting. With this in mind, we were particularly keen to explore this option.

As well as the cost of the Boston surgery, there is also the significant consideration of the stress of travelling to a foreign country for this surgery, the uncertainty of how long we would have to stay, potential ongoing implications and difficulty with not having easy access to support from family and friends. Considering there is a risk of Jessica not surviving the surgery, this would be particularly difficult to cope with so far from home.

However, during the course of the discussion our consultants revealed that they had previously undertaken some fetal surgery with a team based in Oxford although the relevant members of the team are currently working all over the world. The key surgeon happened to be visiting the previous weekend and they had discussed our case with him and he was willing to reassemble the team and consider performing the surgery here in the UK at Oxford (whilst still reserving the right to decline) if Jessica was in a suitable condition at the point it would take place.

As far as we know, this would be the first time this particular procedure will be done in the UK, and although the surgical team at Oxford have had experience of other fetal surgical procedures (4 in total) they have never done this particular surgery. It would involve putting a needle into Jessica's heart (using ultrasound to guide the procedure) and enlarge a hole called the foramen ovale which is between the atria (the top two heart chambers) and allow blood to flow between them. This would reduce the pressure in the blood vessels from the lungs and improve the chance that surgery would be a viable option after Jessica is born.

Obviously, the surgery carries a significant degree of risk. In Boston, where there is more experience of carrying out this procedure, the risk of the baby not surviving the surgery is around 10-20%. Our consultants have estimated the risk to Jessica as being around 20% as the procedure is new to them. There is also a risk of triggering pre-term labour. In order for any post-birth surgery to be an option, Jessica needs to be born at term. If the surgery is successful and she is born at term, it still may be the case that further surgery is not an option as there may already be irreversible damage to the blood vessels going to the lungs. However, it may then mean that we are able to have some time with her after she is born. Having weighed all of this up, we have decided to go ahead in order to try and give our baby girl as much of a chance as we can, and we have been booked in for surgery on 28th June when Louise will be 28 weeks' pregnant.

We are of course both very scared, but are trying very hard to stay as positive as we can and hope for the best. If you can keep us all in your prayers during this time, that would be great. We have received so much support from so many people over recent weeks and it has helped enormously - thank you all. Jessica continues to be very wriggly and we are treasuring every moment that we have with her.