Every mom can tell you that that average ultra-sound is a very close-mouthed affair. The ultra-sound technicians are usually very friendly, but avoiding telling you anything concrete about what they are seeing on the screen.They seem to understand that the slightest frown, or the simplest "What's that?" can start a pregnant mom panic. All this is easily avoided by communicating no information whatsoever. Smart move on their part. I would have panicked much sooner if anyone had given me the smallest of opinions in my first 2 ultrasounds.
Today was a totally different experience. Kelly, my echocardiogram technician, seemed to have a "Well, now that we've already given you the bad news....let's talk about everything" attitude. It was awesome! I felt like I was in an hour long pediatric cardiology class, with a student ratio of 1:1. We talked about everything I had learned so far, then he began to teach me what we were seeing on the screen. Emmett was completely cooperative today (a first!) and he laid flat on his back to give a perfect view of the heart. It looked exactly like it looks in the medical books. You could see all the valves, both ventricles (one slightly larger than the other), the aortic valve, even the blood flow into the heart from the umbilical cord. He showed me several things that Dr. Marx (Boston) had pointed out to him- the left ventricle is still apexing (shaping correctly), all valves are still working, mitral valve looks small but good, etc.
The most important piece of information from the visit was that the left side of Emmett's heart is still growing. Growth is good!
He even related some cases he had seen where even though the left side of the heart ends up hypoplastic (too small), it was big enough to perform its job (it would probably have to be at least 75% of its normal size or larger) and surgery was avoided. He even mentioned a few times when the left side effectively "caught up" to where it should be after birth. Even though these are clearly BEST case scenarios which may never apply to us, it was comforting to know that it was even possible. I will grab on to every piece of hope that is thrown my way like a ravenous dog! I don't believe that getting our hopes up will hurt us in any way.
All in all, it was a very informative, positive day. The official diagnosis remains to be seen.
Wednesday, July 20, 2011
Tuesday, July 19, 2011
The Beginning
Emmett began his journey as a heart baby quite appropriately on Feb.14, 2011. After years of deliberating, Mom and Dad decided to take the plunge into baby #5, on a lovely Valentine getaway in the mountains. Several weeks later, a positive test result confirmed that there was no going back. Big sister and 3 brothers waited with excitement to find out if the new addition would be another boy, or the long coveted little girl.
On June 15, Mom and Brianna went to Kaiser Hospital in Fresno for a routine ultrasound, where they learned that baby would be a boy (hooray....yes, even Brianna took it well). During that ultrasound, the tech took an exceptionally long time to take pictures, and finally gave up and asked a coworker for help. They had difficulty getting a good shot of the left side of the heart, complaining that baby wouldn't sit still or move to the right position. I thought nothing of it, at the time.
Several days later, Kaiser called our home to let me know they wanted to do a higher level ultrasound. The process kicked me over to the genetics dept., which they apologized for, saying that automatically happens whenever a follow up ultrasound is scheduled. I went in to the Kaiser Clovis clinic on June 30, where yet another tech complained of difficulty getting the desired pictures of the heart. I met with Dr. Turosi, the genetic ultrasound specialist, who informed me that he was referring me over to Children's Hospital of Central CA, where they would do an echocardiogram. He did not seem worried, and discussed the possibility of a balloon angioplasty, in the event that something minor needed repair.
On July 11, I went to CHCC to receive the recommended echo. Looking back, I wish I had not made that trip alone, but there was no way to know what a life changing experience it would be. The tech, Dr. Kelly, was really sweet, and confirmed that baby was quite the wiggler. After 30 minutes of work, he was off to go "measure the results." After waiting for the doctor to speak with me almost an hour, it was completely clear that something was wrong. I could tell they were finishing up with other patients so that they could speak with me last. Finally, Dr. Jue, the pediatric cardiologist, came in and took a seat. He confirmed that baby's heart was smaller on the left side than it should have been. He began the discussion, as everyone now does, with an explanation of how the normal heart works. Then he pulled out a picture to show me, what he called "worst case scenario" (which to me meant, this is how your baby's heart looks!) where the left atrium was shrunk down to about 20% of the size of the right. Then he wrote across the top of the paper: Hypoplastic Left Heart Syndrome.
At that point, I was still pretty calm, as I knew some internet research would be required to know what the heck he was talking about. Then the word "surgery" caught my ear. I could feel my brain switch into problem solving mode so I figured I'd better take advantage because it probably wouldn't last long. I made my questions as specific as possible. "Is there any possibility that this condition will correct on its own before birth?" The answer was no. "Is baby guaranteed to have open heart surgery when he is born?" The answer was yes. That was the point where the tears took over. They were both so kind and patient with me. I had to stop myself from running out of the room. The huge amount of extra hormones coursing through my body was not helping. They kept asking if I had any questions, and I knew I should have a million, but I had no idea what they should be. So I thanked them (which only my good upbringing could have forced me to do...I mean, seriously...who says thank you for news like that!) and made another appointment. I walked slowly to the parking lot, knowing I had to call Brian and wondering how to make it sound better than it had sounded to me. Fortunately, he handled the call well and didn't really let it sink in until later.
The next 24 hrs were filled with tears, at least for me. I cried so hard it hurt my head and I couldn't sleep. I researched until I couldn't read anymore. Medical sites = good. Personal sites/blogs= bad. One of the clearest for me was http://congenital-heart-defects.co.uk/hypoplasticheartsyndrome.aspx
The next morning I called Brian's Dad, Dr. David Hammons, retired Kaiser ER doc and medical patriarch extraordinaire. He was familiar with HLHS and decided to put in a call to his Kaiser friend in San Jose, who is a pediatric cardiologist. I mentioned to Dr. Dad (as he will now be referred to) that in my research, I had come across a fetal intervention that is sometimes done in cases of HLHS. It is new, relatively unknown, and practiced in a very small number of places in the world, let alone the U.S. The pioneers of the procedure were located at Children's Hospital of Boston. I asked Dr. Dad to mention it to his colleague, and see if he thought we were candidates for the intervention. He did so, and learned in the process that his Kaiser colleague was college roommates with a doctor from CHBoston who actually diagnoses/performs the intervention. In a matter of a day, my echocardiogram was off to Boston to be evaluated by world class specialists, to see if we were candidates for the procedure. That began a day of monumental gratitude for us.
We knew the intervention was a long-shot. But it got us thinking about all the things that we had to be grateful for, most especially, the support and knowledge of family members. We are grateful to live in a time when congenital heart diseases like this one can even be diagnosed- 30 yrs. ago that was not the case. We are also lucky to get a diagnosis in utero, many parents don't even get that now and give birth, only to find their baby is immediately sick and requires surgery. We are grateful to live so close to one of the best Children's Hospitals in the country, where the required procedures are regularly performed. Many people have to move to live by a treatment center, or spend enormous amounts of money on travel expenses. We are grateful to have health insurance. We are grateful to be a part of an amazing community of family, friends and church. We know we can count on them to get us through the coming days. A sense of gratitude has been the number one factor in dealing with the emotions that have rolled through our home like a freight train during the first week. We have felt the prayers that have been offered on our behalf, and it has made all the difference.
On July 13, I received a call from Dr. Marx at Children's Hospital of Boston. I was amazed that he took the time to call me, and floored at how kind and caring the conversation was. He did not think we were candidates for the intervention, because baby's heart was in good condition. He said, in fact, that he and his colleague did not think that the heart was "moving towards hypoplastic left heart syndrome" and that they felt the more likely problem would end up being a coarctation of the aorta. Suddenly, I found myself with a second opinion, one I had not been seeking, one that differed from the first. He had discussed his findings with Dr. Jue (Children's Hospital here) and Dr. Jue bumped my next appt. to a week instead of a month. A few days later, we met with Dr. Turosi (who referred me to Children's) and went over everything we had learned. He looked at the echo and seemed to think that the diagnosis could go either way, depending on the growth that may or may not take place in the left side of the heart.
So, tomorrow I return to Children's to have another echocardiogram. I'm approaching this appt. with low expectations, after all, how much growth can you see in one week in a heart the size of a grape. Children's will continue treating us as if the baby has HLHS, and we, of course, have great hope that we will see a change in diagnosis over the next few weeks/months to Coarctation of the Aorta. The treatment for HLHS is a series of 3 open heart surgeries that convert baby's heart from a four chamber organ to a two chamber organ. The treatment for CoA is to snip out the narrowed part of the aorta and sew the remaining parts back together. Needless to say, the difference between the two resulting qualities of life is huge.
We are overwhelmed with gratitude for the loving messages and help that we have received so far. Although the purpose of this blog is for me, personally, to have a record of all the events surrounding baby's heart condition, any and all are welcome to follow his journey, learn, and grow along with our family. We have decided, as many heart parents do, to give baby his name now. This makes the journey more personal to us, and easier for all the medical people involved as well.
Emmett Dean Hammons, we await your arrival with more emotions than we would have thought possible. Above all, we have faith that God will carry you in his hand throughout the next year, and our family along with you.
On June 15, Mom and Brianna went to Kaiser Hospital in Fresno for a routine ultrasound, where they learned that baby would be a boy (hooray....yes, even Brianna took it well). During that ultrasound, the tech took an exceptionally long time to take pictures, and finally gave up and asked a coworker for help. They had difficulty getting a good shot of the left side of the heart, complaining that baby wouldn't sit still or move to the right position. I thought nothing of it, at the time.
Several days later, Kaiser called our home to let me know they wanted to do a higher level ultrasound. The process kicked me over to the genetics dept., which they apologized for, saying that automatically happens whenever a follow up ultrasound is scheduled. I went in to the Kaiser Clovis clinic on June 30, where yet another tech complained of difficulty getting the desired pictures of the heart. I met with Dr. Turosi, the genetic ultrasound specialist, who informed me that he was referring me over to Children's Hospital of Central CA, where they would do an echocardiogram. He did not seem worried, and discussed the possibility of a balloon angioplasty, in the event that something minor needed repair.
On July 11, I went to CHCC to receive the recommended echo. Looking back, I wish I had not made that trip alone, but there was no way to know what a life changing experience it would be. The tech, Dr. Kelly, was really sweet, and confirmed that baby was quite the wiggler. After 30 minutes of work, he was off to go "measure the results." After waiting for the doctor to speak with me almost an hour, it was completely clear that something was wrong. I could tell they were finishing up with other patients so that they could speak with me last. Finally, Dr. Jue, the pediatric cardiologist, came in and took a seat. He confirmed that baby's heart was smaller on the left side than it should have been. He began the discussion, as everyone now does, with an explanation of how the normal heart works. Then he pulled out a picture to show me, what he called "worst case scenario" (which to me meant, this is how your baby's heart looks!) where the left atrium was shrunk down to about 20% of the size of the right. Then he wrote across the top of the paper: Hypoplastic Left Heart Syndrome.
At that point, I was still pretty calm, as I knew some internet research would be required to know what the heck he was talking about. Then the word "surgery" caught my ear. I could feel my brain switch into problem solving mode so I figured I'd better take advantage because it probably wouldn't last long. I made my questions as specific as possible. "Is there any possibility that this condition will correct on its own before birth?" The answer was no. "Is baby guaranteed to have open heart surgery when he is born?" The answer was yes. That was the point where the tears took over. They were both so kind and patient with me. I had to stop myself from running out of the room. The huge amount of extra hormones coursing through my body was not helping. They kept asking if I had any questions, and I knew I should have a million, but I had no idea what they should be. So I thanked them (which only my good upbringing could have forced me to do...I mean, seriously...who says thank you for news like that!) and made another appointment. I walked slowly to the parking lot, knowing I had to call Brian and wondering how to make it sound better than it had sounded to me. Fortunately, he handled the call well and didn't really let it sink in until later.
The next 24 hrs were filled with tears, at least for me. I cried so hard it hurt my head and I couldn't sleep. I researched until I couldn't read anymore. Medical sites = good. Personal sites/blogs= bad. One of the clearest for me was http://congenital-heart-defects.co.uk/hypoplasticheartsyndrome.aspx
The next morning I called Brian's Dad, Dr. David Hammons, retired Kaiser ER doc and medical patriarch extraordinaire. He was familiar with HLHS and decided to put in a call to his Kaiser friend in San Jose, who is a pediatric cardiologist. I mentioned to Dr. Dad (as he will now be referred to) that in my research, I had come across a fetal intervention that is sometimes done in cases of HLHS. It is new, relatively unknown, and practiced in a very small number of places in the world, let alone the U.S. The pioneers of the procedure were located at Children's Hospital of Boston. I asked Dr. Dad to mention it to his colleague, and see if he thought we were candidates for the intervention. He did so, and learned in the process that his Kaiser colleague was college roommates with a doctor from CHBoston who actually diagnoses/performs the intervention. In a matter of a day, my echocardiogram was off to Boston to be evaluated by world class specialists, to see if we were candidates for the procedure. That began a day of monumental gratitude for us.
We knew the intervention was a long-shot. But it got us thinking about all the things that we had to be grateful for, most especially, the support and knowledge of family members. We are grateful to live in a time when congenital heart diseases like this one can even be diagnosed- 30 yrs. ago that was not the case. We are also lucky to get a diagnosis in utero, many parents don't even get that now and give birth, only to find their baby is immediately sick and requires surgery. We are grateful to live so close to one of the best Children's Hospitals in the country, where the required procedures are regularly performed. Many people have to move to live by a treatment center, or spend enormous amounts of money on travel expenses. We are grateful to have health insurance. We are grateful to be a part of an amazing community of family, friends and church. We know we can count on them to get us through the coming days. A sense of gratitude has been the number one factor in dealing with the emotions that have rolled through our home like a freight train during the first week. We have felt the prayers that have been offered on our behalf, and it has made all the difference.
On July 13, I received a call from Dr. Marx at Children's Hospital of Boston. I was amazed that he took the time to call me, and floored at how kind and caring the conversation was. He did not think we were candidates for the intervention, because baby's heart was in good condition. He said, in fact, that he and his colleague did not think that the heart was "moving towards hypoplastic left heart syndrome" and that they felt the more likely problem would end up being a coarctation of the aorta. Suddenly, I found myself with a second opinion, one I had not been seeking, one that differed from the first. He had discussed his findings with Dr. Jue (Children's Hospital here) and Dr. Jue bumped my next appt. to a week instead of a month. A few days later, we met with Dr. Turosi (who referred me to Children's) and went over everything we had learned. He looked at the echo and seemed to think that the diagnosis could go either way, depending on the growth that may or may not take place in the left side of the heart.
So, tomorrow I return to Children's to have another echocardiogram. I'm approaching this appt. with low expectations, after all, how much growth can you see in one week in a heart the size of a grape. Children's will continue treating us as if the baby has HLHS, and we, of course, have great hope that we will see a change in diagnosis over the next few weeks/months to Coarctation of the Aorta. The treatment for HLHS is a series of 3 open heart surgeries that convert baby's heart from a four chamber organ to a two chamber organ. The treatment for CoA is to snip out the narrowed part of the aorta and sew the remaining parts back together. Needless to say, the difference between the two resulting qualities of life is huge.
We are overwhelmed with gratitude for the loving messages and help that we have received so far. Although the purpose of this blog is for me, personally, to have a record of all the events surrounding baby's heart condition, any and all are welcome to follow his journey, learn, and grow along with our family. We have decided, as many heart parents do, to give baby his name now. This makes the journey more personal to us, and easier for all the medical people involved as well.
Emmett Dean Hammons, we await your arrival with more emotions than we would have thought possible. Above all, we have faith that God will carry you in his hand throughout the next year, and our family along with you.
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