Transfer of care to Southampton

We had an appointment in Southampton today to meet with the team there for another scan and to discuss the plan for birth. Whilst the team at Southampton have been kept informed about our scans in Oxford and have seen some of the pictures, this was the first time they had seen us and so carried out a detailed scan. Unsurprisingly, the situation with Jessica’s heart is much the same as it was on Monday. However, today’s scan looked more closely at Jessica’s umbilical cord than previous scans and shows that it only has two blood vessels (one artery and one vein) whereas normally it would have three (two arteries and one vein). The team are not too concerned about this – it is something which is more common in babies with congenital abnormalities anyway and although it sometimes indicates kidney problems, Jessica’s kidneys seem to be functioning normally. Just another piece of information though!

The team at Southampton have also helped further clarify the problem with Jessica’s heart. Initially, we thought that it was a variant of hypoplastic left heart (where the left side of the heart is very underdeveloped) but this is not quite the case. The left side of the heart is a reasonable size – the problem is the lack of functioning mitral valve (the valve between the two chambers on the left side of the heart) and the restrictive foramen ovale (the hole between the top two chambers which the Oxford team attempted to enlarge with surgery). The VSD (the hole between the two bottom chambers) allows blood to flow through the left ventricle (the bottom left chamber) and at present the foramen ovale allows blood flow into the left atrium (the top left chamber). This means that the aorta (the main artery providing blood flow to the body) appears to be a normal size (it tends to be smaller in cases of hypoplastic left heart). However because the foramen ovale is very small, this is restricting blood flow and causing back pressure into the blood vessels in the lungs which may be causing the pulmonary veins and vessels in the lungs to become thickened.


Although the methods of analysing the extent of the blood flow problem allow a reasonable assessment of the situation, they are to some extent indirect and it is not possible to be absolutely certain how bad the flow will be after birth once the lungs are in use and the post birth blood circulation is in operation.For ongoing care, Jessica will probably need another operation to open up the foramen ovale (probably by surgery rather than the balloon method used before) as this is the weakest link in the overall blood flow. If the flow is very poor, then she will get very sick quite quickly and in these circumstances she would not be well enough to undergo surgery and recover successfully and no more will be done. If however she appears reasonably well and ‘healthy’ such that she will recover from surgery, then they could attempt to open the hole and improve the situation. However, we don’t yet know how bad the damage to the blood vessels in the lungs will be as a result of the back pressure and won’t know for certain until they are in use after birth.

Clearly there are a range of scenarios from very poor to not too bad which we won’t know until after birth and this will determine what happens and how long this journey is likely to last.

Having been booked at Southampton today, we now have a total of 4 hospitals taking part in our care – we are thinking of starting a guide to fetal cardiac services of the south of England! We also now have a more definite plan for birth – assuming that Jessica doesn’t come early, Louise will be induced at 39 weeks. The induction has been booked so that the post birth resources of staff and facilities can be arranged ready for Jessica’s arrival and also because of the distance we need to travel to get to Southampton!

If Jessica decides to make an earlier appearance, then we will go down to Southampton still but if there isn’t time, then we will go to our local hospital in Wexham Park and Southampton will arrange to retrieve us after the birth for ongoing care.

After birth at Princess Anne Hospital in Southampton, if things look good, we will transfer over the road to the main Southampton General Hospital for care under the paediatric cardiology team whom we met today. They also arranged a tour around Ocean Ward which is the paediatric cardiac ward where Jessica will be cared for if she has surgery.

We were initially anxious about the change in care from John Radcliffe in Oxford, where we had come to know the team quite well and felt safe in their hands, to a new hospital in Southampton. However, having been there today, we felt very much at ease and some of the team looking after us Louise knows from her days as a student midwife so the familiar faces really help. We feel that Jessica is in the best possible hands.

Whilst we know that realistically the odds of surgery being a viable option are still very low, we will continue to pray that this will be an option available to us once Jessica is born.

We are due to have another scan at Oxford next week to keep monitoring the situation with Jessica’s heart and will update again after this.