Our baby has been diagnosed with HLHS (hypoplastic left heart syndrome). We believe that God is in control and will use our situation to glorify his name. As we take this journey, we invite you to join us on our knees and pray for a mended heart.
Wednesday, 28 December 2011
Can you handle a little more prayer? (please??)
I now have the permission to share this publicly: Our family is humbling ourselves once again as we come to you all and ask, would you pray for another one of our little ones? After meeting with the pediatric cardiologist here in Calgary, she suggested that I ask my siblings to have their children scanned as well. HLHS is a congenital heart defect and is often found in families with previously diagnosed heart defects in children. They were surprised to find no family history on either side of our families and thought it would be good to make sure there weren't any that had been undiagnosed. I did not want to email my siblings after this, I felt like it was undue stress to put on them and that the kids all seemed very healthy. After some time, and encouragement from my mom, I sent the email and decided to put the responsibility in their hands.
Ryan and Christen were able to get an appointment with their family doctor and booked the echos within a week. Lindsay and Andy have met with the doctor but need to be referred to a cardiologist before their children can be booked for scans. The doctor that did see them looked for signs of heart defect and didn't see anything concerning and feels that they will likely have clear scans when they are completed sometime in the New Year. Sadie has a scan booked for January 10th....we are praying that she is clear of any heart defect, and find ourselves thinking.....would God really allow us to walk through this with both of our children?
The day before Christmas Eve, we got the devastating news that Ziah's echo (Ryan and Christen's son) came back showing a very rare congenital heart defect. At this point they are waiting to meet with a specialist on January 12th to look at the echo and get some much needed answers. Their family doctor was not able to offer a lot of information and was totally unfamiliar with the diagnosis. I was able to get ahold of my pediatric cardiologist here in Calgary before Christmas to get a little more information for them.
At this point we know that Ziah has atrial septal defect (ASD), a hole in his heart. The echo does not say what size the hole is and this information will make a HUGE impact on how they treat it. If the hole is very tiny, they may do nothing as this happens with small children and will close on it's own most likely. If the hole is a little bigger than they like, they may repair it with a catheter. If the hole is huge, this may require open heart surgery to be repaired and is the least desirable situation as we hope Ziah will not have to have surgery at all, of course! The written part of the echo does not sound like the hole is large but until the pictures are looked at by a specialist, we can't know for sure and will have to wait.
Ziah appears to also have Cor Triatriatum Dexter, I bet that's a new term for most of you!! This means that his right atrium is subdivided by a thin membrane that essentially gives him a 5th chamber in his heart. It's weird to know that Ziah has 5 chambers and Hope only has 2. We've heard a few different results for this and again, we need to wait until the experts look at his specific scan to give us the next steps that he'll face. There is a chance they will be able to leave it and simply keep him under observation as the two chambers are communicating and the blood is pumping through the membrane. If the specialist feels that the membrane is going to cause problems in Ziah's life and future, he may be looking at surgery for this defect as well.
So, as you can imagine we would like you to PRAY!! We have two weeks to ask the Lord to heal this little man and work a miracle in his heart. We are praying that when he sees the specialist there will no longer be a hole in his heart, that the membrane would not be in a position that will cause problems and will heal on it's own or be gone! We are praying that he will not need surgery and will live a long and healthy life. We are thankful as a family that Hope's condition has allowed us to find out about Ziah and have the opportunity to watch him closely and get him the medical attention that he needs. We are thankful that this heart defect is fixable and has a good prognosis.
God must have big plans for this little boy in bringing this to light in such a way. We also believe that he'll be able to encourage Hope and tell her that without her condition, we would have never known about his. God has used Hope to bring our family to our knees, deepen our love for one another and our children and to encourage others. We pray that Hope continues to make a deep impact in this world and believe that our God is capable and has both Hope and Ziah in His great hands.