This story is not mine, it is from Pitu, a follower who has always been there supporting and that good, I do not want to stop giving visibility to a topic that he told me a long time ago and that I already told you in my personal Instagram account for some years.
And sometimes, it is so important to feel supported and supported when you feel so I do not want to stop supporting these families.
Just as in his day I put on Galissea, in case someone was in a case similar to mine and wanted to look for me (he wrote for those than in a forum and I was looking for doubts and support and my story is a bit reflected). So I left this nickname in case they needed to locate me, in case any mother was going through a style experience to my experience of my high-risk pregnancy with Maria (in this link). Let them know that they are not alone and that they can find someone with whom to share their doubts. Coincidentally, I also had to undergo an ultrasound to rule out congenital heart disease.
And we go with the story of Pitu…
World Congenital Heart Disease Day
I am the mother of two children, aged 7 and 4, and the child was born with congenital heart disease, Shone Syndrome.
The pregnancy was normal and delivery … also it went to the few minutes of birth I noticed that something was wrong and it took 3 hours to get them to do us a pediatric case and otherwise measured at the child (amazing, but it was so).
Then, there were hours of uncertainty, hospital transfer, various assessments, emergency operations … a few days so hard that I would not wish them on my worst enemy.
The fact is that in those moments I would have been so grateful to be able to talk with some potatoes in our situation … someone who gave me encouragement, who told me that there was light but naive of me, I could not even imagine that a baby could be born with a sick heart let alone mine (if the pregnancy had gone well!) …
After those first months I looked for information about heart disease and created a group aimed at parents whose children had the same syndrome as mine (according to doctors there would be only about 13 in Spain) today we are 46 dads from all over the world … and we only want other parents who may need us know that we are there.
That is why on Valentine’s Day, taking advantage of the international day of congenital heart disease, we try to give visibility to this cause.
I would like that when my son takes off his shirt and sees “his great seam” people stop seeing him with pity and say things like “poor thing”, “what a misfortune” and think “often champion”.
Broadly speaking that is my story.
It’s always good to support each other
I hope Pitu that if there are people with a case similar to yours, I know where to find you and that you know that there are people who can be supported and to ask for advice.