Babies who have health issues - support & share

What a great thread! Dont know why I have not seen this already.

We found out at 20 weeks that our LG has a cleft lip and possibly palate. We did an amnio to rule out any possible chromosone abnormality and that came back fine.

Now we are just trying to prepare for the birth and what she will look like. I am scared but excited at the same time. Just wish the next 4 weeks could hurry up!

HI Joybaby - hope all is well. Just checking in to see how your appointment went on the 27th

So my firstborn, Kaylee was born with a few Congenital Heart Defects (CHD's) which means that they were present at birth which were not diagnosed in utero (I believe this is a blessing as it would've been a lot to handle during pregnancy).

She was born with Coarctation (narrowing) of the Aorta (valve that supplies blood to the body) and the narrowing affected blood supply to the lower part of her body. On day 8 on 20 August 2010 she had an operation to repair the condition. The operation was successful and went well, however not exactly as the surgeons would've liked due to some other anatomy issues of her heart.
She was at Christian Barnard in ICU for 5 days and general ward for a further 3 and then came home to recover.
I was thankfully at home during this time.
We were advised that there is a 20% chance of recoarctation (re-occurance) as her heart still very small and lots of growing to do and so we knew it could happen that she'd need repeat surgery.
At her 6month check up it was found that scar tissue had grown around the patch and caused recoarctation so on 16 February 2011 she had her 2nd surgery.
This went very well. Her heart had grown and there was more space to work and they were able to do the resection as was the preferred method of operating (The other alternative would've been very drastic and require another operation as the heart got to adult size).

So to cut a long story short, it has been 4 months since her last operation, and on 27th June (next Monday) we go back to the cardiologist to have a check up. While everything seems to be going well, this was also the case before her 2nd operation so the nerves are starting to show again.
If the scar tissue grows badly again she would have to have a balloon stretch by angiogram which is thankfully much less evasive, quicker recovery and less risky. But I am really hoping that this is the end of surgeries relating to this condition.

She also has a bicuspid valve (commonly associated with the coarctation of aorta) - most people have a tricuspid valve so it just means that the aortic valve has to work harder to supply blood to the body and will wear out sooner and in her adult life she will require valve replacement surgery. It can become stenoic (leak) which would require surgery sooner but is more tricky while the heart is still growing. The cardiologist could not be sure of its condition at the last check up as the pressures due to the coarctation would cause an untrue picture to be shown.

She is on blood pressure beta blockers as a result of the recoarctation was extremely high pressures in her upper body and so her heart became used to working at high pressures (which overworks the heart and can shorten its lifespan) so we will also see this month whether the meds have worked and hoping we can stop them too.

She also had a VSD (whole in the lower chambers of her heart) but thankfully this has closed. And a PFO which also closed.
The initial diagnoses the cardiologist suspected palmenary stenosis but since then it has been ruled out. FIL had PS so it is the only family history we have of CHD's so it was rather scary and he took it very hard when he heard she had this.


Anyway sorry for my long story...
This has been a very tiring yet rewarding time in our lives.
I am grateful every day for her life, and at the same time live with constant fear of losing her.
I am currently on antidepressants as I also went through a retrenchment and major financial strain since July last year.

Some days its really hard, and my fellow heart mum friends and moomie friends have really been there for me and helped me get through the tough times.
Thankfully I have a wonderful family & group of friends who also provide ongoing support.
But sometimes it helps talking to people who can relate on some level and so I hope we can lend support and understanding to each other and of course prayer.

Take care and be blessed!

Hi girls

So thank the Lord there are not too many on our forum, but I want to start a group for families who have children who have health issues - conditions / syndromes / chronic illness / congenital diseases etc etc.

Please share your story, and lets be here for each other through the good and the bad days to celebrate victories and have shoulders to cry on during those really hard days.