Our journey is one of those journeys that are less travelled. Have you heard about german measles? I'm sure you do at your childhood days and had been experiencing it. It's one of those childhood sickness that we go through, and we tend to forget. But being infected with german measles at a 1st trimester pregnancy is a different story and definitely not one to forget about.
I was 5 weeks pregnant when I got infected with this so called childhood sickness, which I never thought would ever happen to me... It caused a devastating effect on our son, who was born with cataracts (both eyes), profound hearing loss (both ears) and the most crucial organ was also affected, the heart. He was born with 2 Congenital Heart Defects: PDA & VSD. All pointing out to Congenital Rubella Syndrome.
A VSD (Ventricular Septal Defect) is a hole found in the wall separating the left and right ventricles of the heart.
A PDA (Patent Ductus Arteriosus) is when the Ductus Arteriosus did not close when baby took his first breath. We all have a Ductus Arteriosus, but it closes as soon as we take our first breath.
Unfortunately, Bezalel's patend ductus is still open even when he took his first breath. And we only have limited time for it to be closed because once the pulmonary pressures rise, it will become irreversable thus, we won't be able to have a chance to have his PDA closed by that time. The Pedia Cardio told us it will take years for the pressures to build up, but when this would be, we are uncertain and we are not taking risks on delaying it more especially when his growth is very much affected.
Our journey to having his heart mended started when we first knew about his heart defects after he had his 1st 2D Echo at 5days old. Since then, it felt like the world crumbled upon us. Decision making was between life and death for our son, which was really quite hard. Especially when he is born at 1.3 kilos (2lbs & 14oz) and whenever the doctors would see him, we were always told about the risks. His maintenance had been quite expensive for us, especially when I gave birth to him through C-Section and he stayed in the NICU for 2weeks and 3days. We're doing our best we could to provide for his needs, setting aside the lack of resources we come across each day. We have been to charities and we just ended up being rejected because we cannot defend, “What quality of life will the baby have?” they ask once they will do the needed heart operation. To start, he was never born quite like other babies are. He is SPECIAL. And it hurts that this repeatedly becomes the reason why he can't have free surgery for his heart because he is different.
But we refuse to put our hope on the ground and leave him be as he is, because we have seen his struggles. Even at the very 1st of his heartbeat, he has already been fighting to live, and though I was bleeding at my pregnancy, he made it through that, and even when there are more uncertainties we could count of when he was born, he surprised us though very tiny, he breathed on his own. I wish I could include all the details I could think of of Bezalel's journey to life, but as much as possible I wanted all to know how much he fought strong and still manage to smile and laugh and be happy.
That's why we continue to fight for him and thus we are raising funds even just for his 1 heart defect that would be done through Close Heart Operation to close his PDA so as he could grow much better and his heart would not be burdened too much because of these 2 holes.
Please help us raise the necessary funds Bezalel needs, and to continue to march on this journey we walk with him. He will be turning 2 years old on December 5, 2014. Hopefully, we will be able to raise his needed funds and have his surgery done by January next year.
Thank you, and God bless!