Since February, I’ve been thinking so much about my babies and their hearts. I’ve been thinking about Congenital Heart Defects and so many other things. I really wanted to find ways to help parents know their screening options and not be blindsided.
I’m so thankful that the Save Babies Through Screening Foundation contacted me to share my experiences and to hopefully encourage parents to take action to help protect their children.
It wasn’t easy for me to write, but I just want it to help someone. It will only take a few minutes to read and it may be one of the most important things you read for a long time.
Since February, I’ve been thinking so much about my babies and their hearts. I’ve been thinking about Congenital Heart Defects and so many other things. I really wanted to find ways to help parents know their options and not be blindsided.
I’ve teamed up with the Save Babies Through Screening Foundation to share my experiences and to hopefully encourage parents to take action to help protect their children.
If you have been reading for a while, you know that our first baby boy was diagnosed with many Congenital Heart Defects. My OB actually first saw something wasn’t right. Thankfully, he does ultrasounds at every appointment and honestly, I cannot imagine going to a doctor that does not. I know when he saw something it wasn’t good. He has been a doctor for a long time and I had a feeling he was right, though he said he hoped he was not.
Our OB sent us to a Pediatric Cardiologist. Waiting for that appointment was one of the longest weeks of my life. Leaving that appointment was one of the hardest days of my life.
She did an ECHO (echocardiogram) and determined that our baby boy did have quite a broken heart. She felt there was very little hope for it to be repaired the way it needed to be and even less hope that it could be down in the town in which we live.
Regardless of how helpless we felt leaving that appointment, we knew what we were up against. We knew we needed to pray for a miracle and search for the best doctor out there.
We traveled to several locations and met with many doctors before knowing where we were supposed to be. When we knew, we knew.
Cohen fought for his heart, but he was just too young and small. He went through so much and was only with us less than two weeks. I’m thankful he is better and he is healed now. I’m thankful we didn’t get him home and not know what was going on. I’m thankful that there is medical technology out there that improves everyday. God has a purpose for all of this and a plan for each part of our journey.
You can find posts from our journey here.
Six months after Cohen went to heaven, I became pregnant with twins. Before the doctors even advised us, we knew that we would have ECHOs done on their hearts. I had peace going into that appointment. Thank God, we left that appointment knowing our babies’ hearts were as they should be.
We waited in anticpation for their arrival. At 37 weeks Knox & Sloane were born and it was an amazing day. We had been thinking they would arrive earlier, be smaller, need time in the hospital, etc. Our expectations were incorrect and they came out good sizes and very healthy. We were home within just a few days.
Before going home, we knew our babies were healthy. We knew they were safe to go home. They had their newborn screening they had their hearts checked. Some people don’t know. Some people don’t have OBs who can detect congenital defects. Not everyone goes in for an ECHO while their baby is in utero. Not every baby has a pulse oximetry test or a comprehensive newborn screening before leaving the hospital.
The Save Babies Through Screen Foundation is a foundation states their mission statement on their site….
“The mission of the Save Babies Through Screening Foundation is to improve the lives of children and their families, by working to prevent disabilities and death resulting from disorders detectable through newborn screening tests. The Foundation’s goal is to see that every baby born in the United States is screened successfully, effectively, and comprehensively.
They also share these things, which I think every expecting mother needs to know…
- Newborn screening includes metabolic screening (the heel prick), hearing screening and heart screening (pulse ox). Not every state screens for every condition. It varies by state.
- Save Babies Through Screening Foundation is the only all-volunteer advocacy group in the nation working to save babies through newborn screening.
- Parents need to be aware so that they can ask their baby’s pediatrician what screening will take place, and find out if their baby will be getting screened for all the recommended disorders. If not, parents can find out how to get additional screening on savebabies.org.
- The conditions screened for can occur in any family (like ours) and while sometimes they are genetic, sometimes they are not.
- Parents should ask about the newborn screening results after two weeks. Sometimes the results get lost or parents don’t get a phone call about a positive.
I’ve read the blogs and so many stories of babies coming home and it being too late. Too late to save them because they left the hospital without these screenings. It happens more times than you can even imagine. It’s a small act that means saving lives. It means saving your baby’s life, your grand child’s life.
I encourage you to share this information. If you blog, Tweet or Facebook. Someone out there doesn’t know. They don’t know that there state may or may not do these screenings.
If you blog, HERE is a great resource page on savebabies.org.
Thank you for taking the time to read this.
*I am a Save Babies Through Blogging Ambassador.