Day of Miracles
Yesterday was indeed a day of miracles, from the good news we got in our sonogram, to Joseph's idea to clean the house after school, to the beautiful snowfall we received so early in the season. But most miraculous of all was the beautiful child we met last night.
We learned of Baby Aiya's situation only yesterday. She is firstborn to a young couple who are far from home, from a country far away and a culture very different from our own. Only weeks ago was she diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS), a condition very similar to Zachary's in which the left side of the heart is underdeveloped. Like Zachy, unless she undergoes at least three open-heart surgeries, this sweet baby will not survive. Most HLHS babies have to be put on some sort of life support such as a ventilator and medication within hours of birth. Only after they stabilize to life outside the womb are they taken to surgery, which is typically a few days later.
Aiya's parents were shocked to receive the diagnosis, and in much the same way we were presented Zachy's options, the doctor drew them a picture of her heart and bluntly told them she would need surgery. They were given no information about the success rates of these surgeries, nor were they given any hope that Aiya could lead a relatively normal and less-than-miserable life afterwards. Her parents seemed convinced that she would face certain death, either in surgery or later, and could not bring themselves to submit Aiya to surgery.
So last night we took Zachary to the hospital to meet these worried parents, to show them that there is so much hope, to try to explain things in a way that local doctors either couldn't or just didn't know. We were prepared to meet the parents outside of the ICU, to hear of their daughter, now almost two weeks old, intubated and hooked up to the many machines, monitors, and medications that keep these babies alive. Nothing could have prepared us for what we saw.
Once we arrived at the nurses' station, we saw one very proud father holding a small pink bundle, and a beautiful baby free of any tubes or wires wrapped inside. As we sat down with her parents, we came to understand that Aiya is breathing completely on her own, without even supplemental oxygen, that she is currently not on any medication to sustain her, and that she vigorously nurses her bottle every couple of hours. Steve and I could not believe it... we had to ask again what was indeed her diagnosis. Her parents told us she does in fact have HLHS and a very restricted aorta (just 1mm compared to the normal 10mm for a newborn.) But her cardiologist had told them that at this point she is doing fine on her own, and that she may be able to go several weeks without medication. Incredible!
Still, Aiya's heart will inevitably fail without intervention. And her parents believe her fate is sealed whether or not she undergoes surgery. We introduced them to Zachy, we shared our stories of other HLHS kids we know, we told them that our local doctors don't understand the miracles that surgeons perform on these tiny patients. And I think--I hope and pray--that our conversation inspired them. But still, they pointed out the differences between Aiya and Zachy, and they are right. So we promised them even more stories of children, of adolescents and adults, with Aiya's very diagnosis, who underwent the Norwood procedure, who are leading normal and active lives.
Heart families, won't you please help us in supporting this family? We want to provide hope and share your stories to help them understand Aiya could enjoy a very bright future! If you would like to share your story or that of someone you know, please contact us in the message form below or send me an e-mail. Thanks to all of you who have already responded to my Facebook post; I will pass your information along.
We all know that miracles happen everyday... let's support this family and the precious blessing entrusted to them!
We learned of Baby Aiya's situation only yesterday. She is firstborn to a young couple who are far from home, from a country far away and a culture very different from our own. Only weeks ago was she diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS), a condition very similar to Zachary's in which the left side of the heart is underdeveloped. Like Zachy, unless she undergoes at least three open-heart surgeries, this sweet baby will not survive. Most HLHS babies have to be put on some sort of life support such as a ventilator and medication within hours of birth. Only after they stabilize to life outside the womb are they taken to surgery, which is typically a few days later.
Aiya's parents were shocked to receive the diagnosis, and in much the same way we were presented Zachy's options, the doctor drew them a picture of her heart and bluntly told them she would need surgery. They were given no information about the success rates of these surgeries, nor were they given any hope that Aiya could lead a relatively normal and less-than-miserable life afterwards. Her parents seemed convinced that she would face certain death, either in surgery or later, and could not bring themselves to submit Aiya to surgery.
So last night we took Zachary to the hospital to meet these worried parents, to show them that there is so much hope, to try to explain things in a way that local doctors either couldn't or just didn't know. We were prepared to meet the parents outside of the ICU, to hear of their daughter, now almost two weeks old, intubated and hooked up to the many machines, monitors, and medications that keep these babies alive. Nothing could have prepared us for what we saw.
Once we arrived at the nurses' station, we saw one very proud father holding a small pink bundle, and a beautiful baby free of any tubes or wires wrapped inside. As we sat down with her parents, we came to understand that Aiya is breathing completely on her own, without even supplemental oxygen, that she is currently not on any medication to sustain her, and that she vigorously nurses her bottle every couple of hours. Steve and I could not believe it... we had to ask again what was indeed her diagnosis. Her parents told us she does in fact have HLHS and a very restricted aorta (just 1mm compared to the normal 10mm for a newborn.) But her cardiologist had told them that at this point she is doing fine on her own, and that she may be able to go several weeks without medication. Incredible!
Still, Aiya's heart will inevitably fail without intervention. And her parents believe her fate is sealed whether or not she undergoes surgery. We introduced them to Zachy, we shared our stories of other HLHS kids we know, we told them that our local doctors don't understand the miracles that surgeons perform on these tiny patients. And I think--I hope and pray--that our conversation inspired them. But still, they pointed out the differences between Aiya and Zachy, and they are right. So we promised them even more stories of children, of adolescents and adults, with Aiya's very diagnosis, who underwent the Norwood procedure, who are leading normal and active lives.
Heart families, won't you please help us in supporting this family? We want to provide hope and share your stories to help them understand Aiya could enjoy a very bright future! If you would like to share your story or that of someone you know, please contact us in the message form below or send me an e-mail. Thanks to all of you who have already responded to my Facebook post; I will pass your information along.
We all know that miracles happen everyday... let's support this family and the precious blessing entrusted to them!
Hi! I heard about you from another heart mom, Jenny. Please please let this family know about my son as well. Bodie is 21 months, post-Glenn and also has HLHS and is doing incredibly well. He, like a lot of hypoplasts, had a VERY rought start, but you would never know it now. He runs around like a madman, climbs on everything and talks a mile a minute. He is just like any other kid his age, well, except for a few meds he takes each day, that is. ;-) If she wants to see proof, I keep a blog of my son at www.hopeforbabybennett.com - please also let her know that my son's aorta was very small as well, about 2mm, with even further narrowing (almost a coarc) where it connected to the innominate artery. His surgeon commented on it post-op. The most important thing with a smaller aorta is that she's with a surgeon who has A LOT of experience with Norwoods. Our cardiologist had told us prenatally that Norwood outcomes could be stratified by size of aorta, but our surgeon said for him, it didn't make a difference because he had done so many Norwoods, he could work on really small aortas without big problems. It did make the Norwood a big tricker, but it didn't present any long-term problems.
ReplyDeleteAnyway, please pass my son's story along to her- and let me know if there's anything I can to do help you support the family!
Heart Hugs,
Amy
Im Danielle Klatt I have a wonderfully energetic 9yr old hypoplastic son- Trenton. He had a rough start. His diagnosis wasnt made until after we were discharged from tge hospital. I noticed some respiratory difficulty that inspired me to take him to the er. They immediantly intibated him and lifewatched him to a larger hospital where the diagnosis was made. His prognosis was poor because his asd was nearly closed. The cardiologist strongly recomended a heart transplant. I however wanted to "fix"our his heart instead. It was the right choice. Hes doung wonderful! Typical 9yr old. Runs plays, gets into trouble. Hes awesome. I dont ever regret the choices i made. The little boy in near renal failure, heart failure, if he didnt potty they would have sent us home w hospice will be 10the in January. God works in mysterious ways. My prayers for you is peace in your decisions.
ReplyDeleteDanielle Klatt
Please feel free to email me @ dklattrn@gmail.com
I am Elisha Froetschner and my son, Porter 3 yrs, has HLHS. We live in Kansas but travel to Ann Arbor, MI for his heart surgeries. He has been on ECMO and wasn't expected to live and if he did they (doctors) said he would mentally slow. That is not the case! He came off ECMO the first try after being on for only 4 days. Today he is a VERY SMART, QUICK TO THINK AND TAKE IN NEW INFORMATION. He doesn't NOT miss ANYTHING!!!!! I have been told many times by different people in many different professions that he has a gift, talent, that is nothing like they have seen before. All of these heart kiddos are special and a will about them. This little girl needs are parents to fight for her! To wrap their arms around her and tell her that if she was going to be that strong to live without any medical intervention right now then they were going to be strong and do what needs to be done to allow her to keep fighting!!!!!!!!!!!!!!!!!!!! I have hit my knees in prayer for her, the parents, doctors, and all other families affected by this evil hart condition. I pray that our Lord may wrap his loving arms around us all, guide us, and gives us peace. Anyone is welcome to email me anytime @ emd120682@yahoo.com
ReplyDeleteMark and I pray daily almost hourly for this family!!! While our children (yes both of them) have heart conditions, mild compared to HLHS and others but ones that still required surgery, so much has been gained by having them in my life and my world. You would never know that either of them had/have anything wrong with them, and in my mind they don't. They are perfect exactly the way they are.
ReplyDeleteBless you and all our CHD families. These children are such a blessing in our lives and the lives of those around them.