32 week scan update

Since the surgery four weeks ago, we have been having regular scans to monitor Jessica's heart condition and to assess what the plan is likely to be when she is born. The hole that was enlarged with the surgery seems to have closed up slightly since the surgery but there is still blood flow through it and the blood flow through one of the pulmonary veins still seems to have improved when compared to what it was before the surgery. Jessica is continuing to cope very well with everything - she is very active and there are no indications on scan at present that her heart condition is causing her a problem (in fact she is so wriggly that it makes assessing the blood flow through various vessels quite a challenge at times!) She is also growing well - estimated weight at yesterday's scan was 4lb 2oz, which is fairly average for this stage.


Our plan since the surgery has been for Jessica to be born at John Radcliffe and if surgery was an option, then our preference was to go to Southampton for this. The team at Oxford work closely with the team at Southampton and they have been aware of our case for some time and have seen photos and information from our scans. Until yesterday's scan, the plan was for comfort care only after Jessica was born - it would have been too early to do anything in any case if she had been born before this stage. However, now that we have reached 32 weeks, we have now moved from an automatic 'no' to further surgery to a position of 'maybe'. The team at Southampton are now willing to consider if they would attempt surgery after Jessica is born which is very encouraging news. Obviously though, this would depend on Jessica's condition at birth and how the blood flow through the heart is at that point so any final decision on whether surgery would be an option will have to wait until after Jessica is born.

If Jessica arrives at any point from now onwards, the plan would be to give her prostaglandin which would keep one of her heart ducts, called the ductus arteriosus open (this allows blood flow between the artery providing blood flow to the body and the arteries going to the lungs and normally closes after birth). The team at Oxford may also consider repeating the atrial septostomy (the procedure that she had done in the womb) after birth to improve the chances of surgery. Then if Jessica seems well enough for surgery to be an option, we would be transferred to Southampton for the surgery to take place there. At this stage we don't know exactly how much risk there would be to her with the Norwood procedure (which is the first stage of surgery performed in children with hypoplastic left heart) although it is quite a risky procedure in itself.

We still have quite a way to go yet though and each day with Jessica still being active and wriggling is a huge blessing and gives us a little more hope. Please keep us in your thoughts and prayers if you are able to over the coming weeks. If all continues to be well, our next scan appointment will be in two weeks' time.

Cordocentesis results

We have now got the results back from the cordocentesis (a test which uses the blood from the umbilical cord to check for any genetic abnormalities) and thankfully the results of this have come back completely normal. Although our consultants had already told us that they didn't think Jessica's heart condition was linked to any genetic abnormality, it is still quite a relief to have this confirmed.

The test has also confirmed that baby Jessica is definitely a little girl (it would have been quite a shock if it hadn't given the number of scans we have had so far, but nice to be able to be completely certain now).

Scan update - 2 weeks post-surgery

It is hard to believe that this time two weeks ago we were undergoing surgery to help improve Jessica's odds of survival. The scan carried out the day after the procedure indicated that there was some improvement in blood flow through one of the pulmonary veins but that the blood flow through the other seemed similar to before.

Since then, we have had two further scans - one last week and one today. At present, the picture still seems to be pretty much the same - there is some improvement in blood flow, but there still appears to be high pressure in the left atrium and at present, the plan remains for comfort care after birth. We are continuing to pray that there will be further improvement and that surgery will become an option (it would still be too early for any surgery to be carried out in any case if Jessica decided to arrive in the next couple of weeks).

Jessica still appears to be coping well - she is certainly very wriggly still and tends to get hiccups quite frequently so all seems to be good on that front. At present, there are no signs that her heart condition is causing her any problems and hopefully this will continue to be the case until she is born. She is also growing well - estimated weight at the moment is about 3lb 1oz.

Our next scan is in a couple of weeks - hopefully there will be further improvement to report at that stage.

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.

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.

13 May 2011 - Appointment at GOSH

Thank you all so much for your support and prayers over the past week or so. We had an appointment this afternoon at Great Ormond Street Hospital for another fetal heart scan and a discussion with the consultant. Sadly, we do not have happy news to share with you.

We have been told by the consultant that surgery is unlikely to be a realistic option. He has said that if he was carrying out the heart scan on a newborn and found the abnormalities that our baby has, then he would not be advising surgery as the chances of it succeeding are incredibly slim. The issue we have is with the smaller of the two holes in the heart, which is very tiny. If it was larger, there would be more hope, but because it is small, there are problems with increased pressure in the heart chamber where the blood flows from the lungs which is causing the walls of the veins to thicken and restrict flow from the lungs. This is what makes surgery unlikely to succeed as it relies on the low pressure of the veins being sufficent for blood to flow to the lungs and back. Unless a miracle happens and the heart situation improves drastically, we will be offered compassionate care for our little one after birth for however many days she will be with us.

We are both utterly devastated by today's news but will continue to pray for a miracle. In the meantime, we will be making the most of every precious moment that we have with our little girl in the coming weeks. We have decided to name her Jessica Charlotte - Jessica means 'God sees' and Charlotte means 'feminine' but can also mean 'strength'.


We will be having further heart scans at John Radcliffe to see how things progress but the outlook looks quite pessimistic at present.

Any prayers for baby Jessica and for strength for us as parents as we journey through the weeks ahead would be greatly appreciated.

4 May 2011 - The start of the journey

We went for our anomaly scan yesterday morning and were told that our baby has some serious heart abnormalities. We have been referred to the John Radcliffe Hospital for further tests and thankfully managed to get an appointment for a detailed heart scan yesterday afternoon. The news we have received is not good. Basically, this is how I understand it at the moment (apologies if it is a little technical):

Normally the heart has two sides each with two chambers. Oxygenated blood leaves the heart on the left side and goes to the body where the oxygen is used and then the deoxygenated blood returns to the right side of the heart, passes through the two heart chambers and is pumped to the lungs where it picks up oxygen. This newly oxygenated blood returns to the left side and is pumped around the body again. So one side of the heart deals with oxygenated blood and the other deals with deoxygenated blood and the two are not mixed.

With our baby there are several defects which mean this process is not happening as it should and there is a mixing of the oxygenated and deoxygenated blood in the heart and the blood cannot flow around the body as it should. Firstly, the valve (called the mitral valve) between the two chambers of the left side of the heart (left atrium and left ventricle) is not there which means there is a complete blockage. This means that the left ventricle (bottom left chamber of the heart) is underdeveloped. The lack of mitral valve would normally mean that no blood flow reaches the left side of the heart resulting in this being considerably underdeveloped (a condition called hypoplastic left heart) and the aorta (the main blood vessel which provides blood from the heart to the rest of the body) being narrowed. The left side of our baby's heart is small but not tiny and whilst no narrowing of the aorta was seen on scan, it is likely to happen or have happened further along. There are also two holes in the wall separating the left and right side of the heart (called ventricular septal defects or VSDs). This has has allowed some blood flow into the left side of the heart. One of these is very small, the other is a little bigger. They are likely to get smaller as pregnancy progresses and the small one may close.

We have been told that babies usually tolerate this situation fairly well until birth. If we make it until term, and baby is born alive then surgery to ease the heart defects (although not correct them) may be an option. If not, or we choose not to have surgery, then the baby will survive a few days or weeks at best. If surgery is an option then we are looking at three major operations - one shortly after birth (which I think is called a Norwood procedure), one around 3-6 months and one around 2-4 years (Fontan procedure). The odds of our child getting through these operations and making it to age 5 is around 50%. Children who survive to 5 often survive to around 15 and then many will survive into early adulthood. The first Norwood procedure was performed in 1981 so the oldest survivors are in their 20s - we don't know what life expectancy is but of course it is likely to be significantly reduced and even getting to the age of 5 will be an achievement. If the child can get through all three operations than they can generally live a fairly normal life although will not be winning any gold medals in running.

The cardiac consultant thinks this is likely to be an isolated abnormality and not caused by chromosomal (genetic) abnormalities as everything else appears to have developed normally on scan. The smaller of the two holes in the heart is a cause for concern particularly with surgery. At this stage, we have been told it may be an option but this situation may change and we will need to discuss this with the team of surgeons at Great Ormond Street Hospital. We have been given the option of a termination which we have declined - our baby is in God's hands and we want to give her every possible chance that we can.

We hadn't planned to find out the gender but this news has changed that - we both feel very strongly that we need to be able to bond with our baby as much as we can right now and this information will help us to do that. On scan it looks like we are expecting a baby girl. Currently she is still nicknamed Sprout but we will be giving her a name very soon. She is very wriggly at the moment and we are looking on each day that we can have with her as a huge blessing.

We will continue to have repeated heart scans throughout the pregnancy to see how things develop and will be seeing a consultant for our routine check-ups at our local hospital. Obviously we are both devastated by the news - my mum has come up to be with us and Michael's parents have also been wonderful. We are trying to take each day as it comes but we know we have a very dark and difficult journey ahead of us and are praying very, very hard for the best possible outcome for our little girl.

Please can you keep us in your thoughts and prayers during this difficult time. I know that it is hard to find words that can help us during this time, but the support of our family and friends is so very important to us - we want you to feel that you can phone and talk to us still and ask about our little girl even if you feel you don't have the right words.