Dealing with bad news

[Rommy'sMummy]

That makes sense. WCH and RCH are fantastic! We see Gavin at WCH and have had him since our scan at 20 weeks. I go in for appts there with my son still and will be having my scan with Gavin in two weeks to see if this bub has heart disease too (). He is an amazing man who has saved my sons life - not only by his management of his care but he also resuscitated him once. I cant speak highly enough of him. I dont know if you are going private or public but see if you can get him to care for you and bubs. Tell him Roman's mum sent you! Check out the photo board in WCH cardiology waiting room - look for a photo of my boy Roman! My boy was on pg 38 of the Advertiser this Tue just gone if you want to see how well he looks now - after many trips to RCH and a very complicated set of heart abnormalies (six in total).

Our boy was early and too small for surgery - we managed to wait for 5 weeks in NICU before he became too sick and was airlifted to RCH.

Ross Haslam is the head of NICU and a very skilled and dedicated man, he is recognized across Aust as a leader in NICU medicine and care and a very sweet man.

Make sure you spend some time talking with Wendy Duncan (cardiac nurse) too. She if invaluable. She can help you with coping with all this as well as being a very skilled and experienced nurse who can explain things better than the Dr's a lot of the time. She will also be able to help prepare you for Melb. Ask Wendy for the book we just launched in Jan "No such thing as a silly question". If she doesnt have any left I have one more copy that I can leave at WCH for you. It is designed to help you find your way through this.

Appologies if I am bombarding you with suggestions. I am an "old hand" now and would love to help you if you want it. If you want to catch up for a coffee in WCH one day let me know.

Rachel

[Rommy'sMummy]

Sezza, we were spoken to about that as well. Rommy had a two vessel umbilical cord (one artery) as well, and the growth restriction, and a very small and deteriorating placenta. He also had reversal of flow along the umbilical cord which really affected his growth later in the pregnancy - even with the pre-term labour we made it to 36 weeks!

We had an amnio with Rom as well but of course didnt test for the chrom issue that the cardiologist were worried about as we didnt find out about his heart until 20 weeks. Had to wait until birth to see if it was there. From memory there was a stronger correlation between boys-heart-chromosomes issues than for girls-heart-chromosomes.

Roman is fine chromosomally and has no brain impairment at all. He is bright and learning well now.

[Sara69]

Sezza just wanted to send you a

Sara

[sezza]

Sezza, we were spoken to about that as well. Rommy had a two vessel umbilical cord (one artery) as well, and the growth restriction, and a very small and deteriorating placenta. He also had reversal of flow along the umbilical cord which really affected his growth later in the pregnancy - even with the pre-term labour we made it to 36 weeks!

We had an amnio with Rom as well but of course didnt test for the chrom issue that the cardiologist were worried about as we didnt find out about his heart until 20 weeks. Had to wait until birth to see if it was there. From memory there was a stronger correlation between boys-heart-chromosomes issues than for girls-heart-chromosomes.

Roman is fine chromosomally and has no brain impairment at all. He is bright and learning well now.

Thankyou. You cant possibly understand how much it helps knowing that you have been through a similar thing (probably even worse), and that your little boy is doing so well. The reversal of flow along the umbilical cord, brain sparing and worsing of the growth restriction are the major things they are watching out for with bubs. Aparently thats the next step from where we are at the moment, but fingers crossed that things will just continue to be stable and we make it to 36 weeks too.

[sezza]

Update on us. The news unfortunately is not good.
Our baby's growth has taken a turn for the worst and the Doctors are now fairly confident she has a form of dwarfism and not intrauterine growth deficiency as intially thought.
We are going for an appointment with several specialists in a week and a half to determine how bad the dwarfism is, if there are other systems involved and if they can shed any light on the suspected heart condition (coartation of the aorta).
We have been told that we still have the option to terminate until 28 weeks in Victoria. At the moment the news is still very upsetting and we are unsure of what decision we will make.

We just don't want to see our baby girl suffer.

[buliej]

Sezza - I'm so sorry - my heart breaks for you and your DH.

[Rommy'sMummy]

oh Sezza. I am so sorry. I am praying and hoping for better news for you at your next meeting with the specialists.

My heart goes out to you...

Rachel

[mrsmac]

Sezza I am praying things aren't as bad as they seem