This is long, and I am on my phone so apologies for any typos.
We went through similar during the 20 week scan with my youngest DD, now 10. I know just how scary and gut wrenching the feeling is. I would like to share with you our story, to show things can have a happy ending. Also I hope it will show you the level of care we got, and although your journey will be different and unique to you, to give you an idea of what might happen.
During that scan they found heart issues, excess fluid, echogenic bowel, short femur length and a two vessel cord.
Very early on in the scan it became clear they were worried and we were told that they would get a senior person in for help and that person then fetched a third.
We were told the images needed to be looked at and had to wait in the hospital for a little over an hour before the specialist midwife team and consultant came to see us.
We were spoke to about all of the problems and really prepared to be given some bad news about some debilitating chromosome problems, many of which were simply not survivable.
We were referred to a specialist team at Queen Charlottes and seen a couple of days later. We had numerous tests including amniocentesis.
Despite all of the separate issues there was no chromosome problems.
We were referred to the cardiologist team who saw us within a week of the initially 20 week scan appointment. They carried out a really long and detailed scan and we were told that our DD had either a total or partial blockage of the aorta, a medium to large VSD and hyperplasia of the left heart, which at this stage couldn't be determined if was severe enough to be hyperplasia left heart syndrome.
We were floored. From that point on we were scanned every 2-3 weeks at Queen Charlottes and saw the specialist midwifery team at our local hospital weekly.
Throughout the pregnancy they could not be sure of the exact diagnosis regarding the aorta (if the blockage was total or partial) or the extent of the underdevelopment of the left side.
The other problems were monitored, the echogenic bowel resolved, the fluid stayed the same but didn't cause issues, and the cord was monitored for degeneration.
We were given the upmost care. We spent a huge amount of time at hospital appointments, but can not fault any of the care.
Plans were put in place for the birth. My DD would need surgery straight away at birth, at a specialist unit (The Royal Brompton). We were given superb advice to try to decrease the risk of birth interventions as much as possible (so I could leave the hospital with my DD, now have to wait on an antenatal ward). Plans were made so that as soon as my daughter was born they would start a drip to keep the little vessel that by passes the aorta open and a transfer would be made to the Brompton.
In the end the birth didn't go quite to plan. My waters broke at 37 weeks and I was admitted straight into hospital, as per the plan. Contractions didn't start, however after 8 hours there was a very slight dip in DDs heart rate. Very small, would normally only be monitored but due to the situation I was immediately prepped and taken down for a cesarean. This was the correct call as they found the cord tightly around her neck. I am so great full they picked up on the dip in heart rate and acted so quickly.
My DD was born a couple of minutes before midnight weighing a tiny 5lb10, and by 1am was being transferred to the PICU at the Brompton. I was still totally numb and had to be helped to sit up and say goodbye. It was 4 days before they agreed to release me (I had some bowel issues following surgery and there was no antenatal unit at the Brompton to monitor me).
My DD was operated on at 30 hours old. They found the aorta to be partially blocked and this was repaired. Even during surgery the left side development was still seen as borderline, so the surgeon and cardiologist had to decide to either follow the treatment path for hyperplastic left heat syndrome (HPLHS), or for hyperplasia.
If treated for HPLHS it would be the start of a long series of operations and an eventual heart transplant. If treated for hyperplasia with Brandon and it was the wrong call, there was a chance DD would become very ill and need further surgery.
In the end they decided to go with the banding and it was the right decision. I still don't know who they can make these life and death decisions on a heart so small. I am so thankful to the whole team. The VSD was left, with the intention of monitoring and correcting when DD reached around 5 years.
The first 6 months of DDs life were spent in and out of hospital, every cold or slight bug and she would get very unwell. We got to know along the staff on the pedestrian ward very well.
DD didn't grow as well as she should do needed specialist top up feeds with fortified formulas.
At 5 months DD deteriorated, rapidly. Within a couple of days she would barely be awake for more than a 10-20 minutes at a time. Within a few days if this she was back in for surgery with a bypass. The VSD was repaired and banding removed. Straight after the operation she was a new child. So full of entertainment it was untrue.
Her physical development was a little behind due to her health problems, but by the time she was three she had more or less caught up.
She is now 10 and a healthy, energetic child. Loves netball, violin, fencing and choir. Unless you seen her without a top on you would never know all of the problems she has had.
Each year she sees her cardiologist for a check up and heart scan, and at some point in the future is likely to have to have her aorta operated on again, but she is fine. Absolutely and totally fine.
Sorry that was long! I did leave out a lot of stuff. I just wanted to share with you that yes it will be a rollercoaster, but it is possible to have a happy ending.
If you want to ask anything, please go ahead.
