mzyos

I can add a little to this, I do work as a doctor in obstetrics, but foetal medicine is not something I can claim as an area of expertise. Firstly I’m sorry for your loss, it’s an area a lot of people shy away from and it can feel incredibly lonely go through. It’s nice to see recognition of this coming into the public domain more than it ever has before.

The first thing to say is from our point of view is balance. There are things we do as obstetricians that can severely harm, or cause the death of a baby. This can be from both action, or inaction. There may be a risk of the baby dying inutero (stillbirth), but delivering them earlier than expected will also increase this risk. This is especially so in those from 24-32 weeks. Doing these early deliveries (usually Caesarean section) can also cause harm to the mother and affect subsequent pregnancies. We have to balance the risk of keeping the baby in the uterus vs the risk of bringing them out into the world. At 28 weeks there is about a 10% mortality, so 10%of babies will not be able to survive leaving the hospital. This does not include disability later in life and survival over 3yrs of age which is likely less than the 90% of those that leave the hospital.

Therefore we have to decide which option carries not only less chance of death, but also less chance of severe disability. Ultrasound and foetal heart monitoring can help us with that. Whilst not perfect (user error/measurement discrepancies/limited resolution of picture) it is the only option we have. Usually if the growth is steady and the dopplers (blood flow from baby) are good then we can bide our time until a safer time to deliver (34-36 weeks) where mortality post delivery is low. If we are thinking about a delivery in the realms of 24-32 weeks something life threatening there and then needs to be occurring, such as a severe abruption where death is imminent without delivery.

I will say little else about the varix as I don’t know anything else about your baby in terms of the scans and other results, and there is fact that I will not be able to offer anything you don’t already know from looking in to it and talking with the people you will have already spoken to. It’s rare, there isn’t a mass of information about them, and we are mainly looking out for thromboses of the varix (clots). The bleed near the umbilical cord end is seen in infection, trauma of the cord (umbilical cord blood sampling) and defects in the cord. The Wharton’s jelly deficiency could cause this and I can see why they outlined this as the likely cause. What happened was a “freak” occurrence, it was a possibility but not an absolute. Do we wait and see whilst monitoring (with a possibility of still birth being, let’s say, 5% as I don’t know the figure, or do we deliver at the time despite baby appearing well, with a 10% possibility of baby dying, and much higher possibility of a neurological disability.

I’m on night shifts, so I apologise now for any spelling mistake and the likes.

What age did you develop SMA, and what were the first symptoms your parents noticed?

Thank you for answering my previous question.

I've met a few babies with type 1 whilst I've been training. However, I'm yet to meet a patient with type 2 who is an adult. May I ask what the most active muscular movement is you can currently do? And if there are none, are you still able to move your eyes to look at objects?