Today we saw the pediatric cardiologist for the last time. I drank a bunch of sugar soda today to try and get her to move into a different position. It worked after a little bit. During the last half of the fetal echo, she started to move around and let the cardiologist see her heart.
He got much better pictures. He saw that not only did she have the small right ventricle, she also had Tricuspid Atresia and ventricular septal defect (VSD). The tricuspid valve lets blood flow from the right atrium to the right ventricle. The tricuspid valve was never formed. So the right atrium had nowhere for the blood to flow. The right ventricle was off to the side and not connected at all to the right atrium. Also between the two ventricles, there was a hole (VSD) that let the oxygenated blood coming from the lungs mix with the de-oxygenated blood from the body. All of this wouldn't give her enough oxygen to survive.
He discussed the surgeries. Like before, there would be 3. One days after birth, one at 6 months, and one at 18 months. These surgeries would be palliative (not a cure, just a treatment) and she wouldn't have 100% oxygen until after the last one. Because the first 2 surgeries just sort of shifted the blood vessels and moved blood around, her oxygen saturation (amount of oxygen in the blood) would only be 75-80%, where most of us live 95-100%. After the last surgery, it would be 100%. Unfortunately, those 18 months are key to brain development and other cell growth. Cells don't grow without oxygen. She would likely have developmental delays, lack fine motor skills and would be small for her age. Not to mention the pain of the surgeries, 2 out of 3 of them being open heart. Her 20 year survival rate was 60% and her chances of living to 10 years old was 70%, which are not strong odds. At some point, she would have to have a heart transplant.
We had a lot to think about. I felt like such a selfish person if I said that we shouldn't bring her into this world because of things that we may not ever be able to do. And then I felt like bad mother because I didn't want her to have to go through all of that so maybe we should just let her go. My sister pointed out that I would be a selfish person to bring her into this world to go through all of that pain and suffering just because we wanted her here so badly. She would never be able to have children with a heart like that, and what if she died after only 15 years? That's not fair to her. I could imagine asking us, "why me? why do I have to die now?" Because we chose to bring you into the world. It would never be fair to her and I could never forgive myself. I would feel like it was my fault that she was dying. It would be more compassionate to let her go and take all of her pain for her so that she would never have to suffer.
Adam and I decided that the best thing for her was to let her go. She would never feel pain and always be safe.
Wednesday, September 21, 2011
Tuesday, September 20, 2011
More answers
I met with my own cardiologist today, just out of chance that my appointment was today. After we talked about me, I asked him about Addison. I asked him how many patients he saw at the adult age (he sees patients over the age of 18) with her problem, and he said not many.
When I told him that I couldn't bear the thought of killing my baby, he said, "Well, let's look at it in terms of opposites. What's the opposite of killing? Saving, right? Are you saving your baby if you bring her to term?" I said, "No....we'd be prolonging it." He told me that our gut instincts were right and we should follow them. He said that patients with congenital heart defects who face multiple surgeries often have physiological, emotional and psychological difficulties.
I was considering cancelling my appointment because I wasn't sure I wanted to go. I'm glad I did. He gave us more information, which is what we needed desperately.
When I told him that I couldn't bear the thought of killing my baby, he said, "Well, let's look at it in terms of opposites. What's the opposite of killing? Saving, right? Are you saving your baby if you bring her to term?" I said, "No....we'd be prolonging it." He told me that our gut instincts were right and we should follow them. He said that patients with congenital heart defects who face multiple surgeries often have physiological, emotional and psychological difficulties.
I was considering cancelling my appointment because I wasn't sure I wanted to go. I'm glad I did. He gave us more information, which is what we needed desperately.
Monday, September 19, 2011
Meeting with the pediatric cardiologist
We had our first fetal echo today. She was all curled up and the pediatric cardiologist only got a few pictures and was unable to get some good views. We talked afterwards, and the first thing he brought up was the possibility of termination of our pregnancy. He discussed her limitations, the surgeries she would have to have when she was born. We are not sure what we are going to do. We made another appointment for Wednesday so that we can get a better picture of her heart and maybe more answers. He wasn't willing to give a definitive diagnosis without better pictures.
We cried a lot that night. I got home from bringing my mom back to work and cried with Adam for hours. I tried to fathom both of the options: not having Addison with us or bringing her into the world and going through surgeries, having to struggle and possibly not having any more children because she would need so much care. We didn't know what to do.
We cried a lot that night. I got home from bringing my mom back to work and cried with Adam for hours. I tried to fathom both of the options: not having Addison with us or bringing her into the world and going through surgeries, having to struggle and possibly not having any more children because she would need so much care. We didn't know what to do.
Friday, September 16, 2011
They'll see us on Monday!
We are able to get in to see a top Pediatric Cardiologist on Monday!! Thanks to my fantastic mother in law. He will do a fetal echocardiogram (basically an ultrasound of the heart) which I'm sure will show much more than just the regular ultrasound. Plus, he knows what he's looking at and what he's looking for. Hopefully after that, we will have a diagnosis, a prognosis and a plan. I am terrified to hear what he has to say, but I am so glad it's on Monday and not in 2 weeks.
Wednesday, September 14, 2011
I'm a "heart mom"
Not something I ever thought I would say. We are heart parents now. Our baby has a heart defect and that will forver change us. I read it today on a post on my online message board. She referred to herself and me as heart moms. What an amazing thing.
Genetic Counselor called
So far, Addison's tests are normal. She is negative for Trisomies 13 and 18, Down's Syndrome, Turner's Syndrome and spina bifida. All of this is good news. We aren't completely out of the woods for another week or more, but for now, those are ruled out. We are very happy with this news and want to know the rest ASAP!
The Day our Lives Changed Forever
This is my first time writing a blog (except, of course, livejournal back in the day). A little background: this week I am 19 weeks pregnant with our first child. A little girl, Addison Lila. Everything about my pregnancy has been great. Some nausea the first trimester, but otherwise pretty good. Adam will also claim I had some emotional "outbursts," but I plead the 5th on that.
Yesterday, on Tuesday September 13th, our lives changed forever. We went in for our routine anatomy scan. We had no reason for worry, neither of us have birth defects in our family history, I had been taking my prenatals forever, my sisters have healthy babies. No need for concern.
The ultrasound (u/s) tech was doing her thing and was pointing out different structures, even though we couldn't tell one thing from another. Heartbeat was great, we saw her spine, kidneys, brain, bones, hands and feet. She spent a long time on her heart. Never having been through this before, I figured that once again, Addison was being uncooperative for her pictures. She kept checking blood flow through the heart, again and again.
After a little while, a doctor came in the room to watch what the tech was doing. This is never good. After a few minutes, they left the room to go talk to the attending. I knew that for the most part, this was normal - the resident going to confirm pictures with the attending. What worried me was that the ultrasound tech went with her. When we had our 13 week Nuchal Translucency u/s (measuring the fluid in the neck - an increased amount shows a risk for Down's syndrom) the tech stayed with us and cleaned up while the doctor came in and said everything looked great.
When the resident came back, she said, "we saw something abnormal on the scan, and so I'm going to bring you to another room to talk about it." Adam, my mom and I walked next door, my heart pounding and my mind racing. It had to be her heart.
It was. The resident said that it appears that Addison has Hypoplastic Right Heart Syndrome. Her right ventricle (the bottom chamber of her heart that pumps blood to the lungs) did not develop fully. This condition is very rare, even more rare than Hypoplastic Left Heart Syndrome. The doctor showed us a picture of a normal heart and what our baby's heart looks like. She showed us the u/s picture where we could see 3 chambers, but not a 4th.
The doctor explained that there could be several reasons for this. A random event that just happened because the cells there didn't divide or a chromosomal defect. Even though our Down's screening and Trisomy 18 screening came back negative, there is still a possibility that there was something wrong. After all, those were just screening tests, not definitive. She explained the fix for it - 3 surgeries within the first 18 months to 2 years of her life to create a bypass for deoxygenated blood to go to her lungs without having to go through the small right ventricle.
We decided we wanted to see the genetic counselor (so wonderful to be a a big hospital with these resources available when you need them the most) and talk to her. While we waited for her, we sat in the consult room by ourselves and just cried and cried. Why us? Why our baby? The baby that we wanted so badly and that we finally had. How could she not be perfect?
The genetic counselor went through our family histories, but again - the only thing we really have running in our families is cancer, and really, who doesn't nowadays? We discussed the major chromosomal defects that it could be - Trisomy 13, 18, 21 (Down's Syndrome), monosomy X (only 1 X chromosome - also called Turner Syndrome) and alpha fetoprotein (spina bifida). The only way to know for sure was to take a sample of Addison's cells and the only way to do that is an amniocentesis (sticking a fine needle into my uterus to take a sample of the amniotic fluid) and send that off. The counselor said that final results would take 14 days, but we could have a "rapid result" in 2 days, with the 5 most likely offenders listed above. We opted to do that for the short term and find out the rest in 2 weeks. We needed to know.
As we waited for the amnio to be set up, we were again alone in a room. Tears galore. I went back into the u/s room for the amnio. I asked the tech if it hurt and she said that most patient say they'd rather have an amnio than an IV put in. Uh, hell no. Stick an IV in me any day. The needle they used was small, and it didn't hurt badly when she was going through my skin and fat, but they had to get through the wall of the uterus, which is a thick mucle. That hurt. It was like a huge prick and a cramp at the same time. I never want to have to do that again. I would do it, however, if I needed to. I just don't want to have to.
After that was done, we went to our scheduled doctor's appointment 3 hours late. We got a few questions answered by the few doctors we saw. I can have a normal delivery if that's what happens. I will have growth ultrasounds every month or so to make sure she is still growing well. We'll do a fetal echocardiogram at a pediatric cardiologist to sort of get a "second opinion," but also so they can follow me throughout my pregnancy and care for Addison when she's born.
We didn't ask how soon after she is born that she'll have her first surgery. We assume within days. Babies are born with two holes in their heart, the Ductus Arteriosis and the Foramen Ovale, both helping the baby to circulate blood. When they are born, the holes naturally close. From the resources I've read (hello, Dr. Google), she will have a medication to keep those holes open for a few days and then do the surgery. We will eventually meet with the surgeon and the pediatric cardiologist to get more information. Right now we're just waiting for the chromosomal tests. That will give us more answers. We are hoping with all hope that it was just a random problem.
What breaks my heart is that she will be in the NICU for a long time. I don't get to bring home my newborn baby after a few days. She will have wires and leads and oxygen. I won't be able to hold her when I want and have her at home with me. We have complete confidence in UNC and their surgeons and their NICU. I just wish we didn't have to do it.
I've heard many stories about how someone's family member/friend has gone through this and is a healthy 2/4/9 year old. And that comforts us. The doctor even told us that her godson has this and is a healthy child now. We know Addison will be healthy. What kills us is that she never even had a chance to fight this. She'll have operations right away. At least she won't remember it. We know she will be okay one day. We just don't understand why.
We will keep this updated as we know more information. Here is a link with more information for you if you want it. Hypoplastic Right Heart Syndrome.
Yesterday, on Tuesday September 13th, our lives changed forever. We went in for our routine anatomy scan. We had no reason for worry, neither of us have birth defects in our family history, I had been taking my prenatals forever, my sisters have healthy babies. No need for concern.
The ultrasound (u/s) tech was doing her thing and was pointing out different structures, even though we couldn't tell one thing from another. Heartbeat was great, we saw her spine, kidneys, brain, bones, hands and feet. She spent a long time on her heart. Never having been through this before, I figured that once again, Addison was being uncooperative for her pictures. She kept checking blood flow through the heart, again and again.
After a little while, a doctor came in the room to watch what the tech was doing. This is never good. After a few minutes, they left the room to go talk to the attending. I knew that for the most part, this was normal - the resident going to confirm pictures with the attending. What worried me was that the ultrasound tech went with her. When we had our 13 week Nuchal Translucency u/s (measuring the fluid in the neck - an increased amount shows a risk for Down's syndrom) the tech stayed with us and cleaned up while the doctor came in and said everything looked great.
When the resident came back, she said, "we saw something abnormal on the scan, and so I'm going to bring you to another room to talk about it." Adam, my mom and I walked next door, my heart pounding and my mind racing. It had to be her heart.
It was. The resident said that it appears that Addison has Hypoplastic Right Heart Syndrome. Her right ventricle (the bottom chamber of her heart that pumps blood to the lungs) did not develop fully. This condition is very rare, even more rare than Hypoplastic Left Heart Syndrome. The doctor showed us a picture of a normal heart and what our baby's heart looks like. She showed us the u/s picture where we could see 3 chambers, but not a 4th.
The doctor explained that there could be several reasons for this. A random event that just happened because the cells there didn't divide or a chromosomal defect. Even though our Down's screening and Trisomy 18 screening came back negative, there is still a possibility that there was something wrong. After all, those were just screening tests, not definitive. She explained the fix for it - 3 surgeries within the first 18 months to 2 years of her life to create a bypass for deoxygenated blood to go to her lungs without having to go through the small right ventricle.
We decided we wanted to see the genetic counselor (so wonderful to be a a big hospital with these resources available when you need them the most) and talk to her. While we waited for her, we sat in the consult room by ourselves and just cried and cried. Why us? Why our baby? The baby that we wanted so badly and that we finally had. How could she not be perfect?
The genetic counselor went through our family histories, but again - the only thing we really have running in our families is cancer, and really, who doesn't nowadays? We discussed the major chromosomal defects that it could be - Trisomy 13, 18, 21 (Down's Syndrome), monosomy X (only 1 X chromosome - also called Turner Syndrome) and alpha fetoprotein (spina bifida). The only way to know for sure was to take a sample of Addison's cells and the only way to do that is an amniocentesis (sticking a fine needle into my uterus to take a sample of the amniotic fluid) and send that off. The counselor said that final results would take 14 days, but we could have a "rapid result" in 2 days, with the 5 most likely offenders listed above. We opted to do that for the short term and find out the rest in 2 weeks. We needed to know.
As we waited for the amnio to be set up, we were again alone in a room. Tears galore. I went back into the u/s room for the amnio. I asked the tech if it hurt and she said that most patient say they'd rather have an amnio than an IV put in. Uh, hell no. Stick an IV in me any day. The needle they used was small, and it didn't hurt badly when she was going through my skin and fat, but they had to get through the wall of the uterus, which is a thick mucle. That hurt. It was like a huge prick and a cramp at the same time. I never want to have to do that again. I would do it, however, if I needed to. I just don't want to have to.
After that was done, we went to our scheduled doctor's appointment 3 hours late. We got a few questions answered by the few doctors we saw. I can have a normal delivery if that's what happens. I will have growth ultrasounds every month or so to make sure she is still growing well. We'll do a fetal echocardiogram at a pediatric cardiologist to sort of get a "second opinion," but also so they can follow me throughout my pregnancy and care for Addison when she's born.
We didn't ask how soon after she is born that she'll have her first surgery. We assume within days. Babies are born with two holes in their heart, the Ductus Arteriosis and the Foramen Ovale, both helping the baby to circulate blood. When they are born, the holes naturally close. From the resources I've read (hello, Dr. Google), she will have a medication to keep those holes open for a few days and then do the surgery. We will eventually meet with the surgeon and the pediatric cardiologist to get more information. Right now we're just waiting for the chromosomal tests. That will give us more answers. We are hoping with all hope that it was just a random problem.
What breaks my heart is that she will be in the NICU for a long time. I don't get to bring home my newborn baby after a few days. She will have wires and leads and oxygen. I won't be able to hold her when I want and have her at home with me. We have complete confidence in UNC and their surgeons and their NICU. I just wish we didn't have to do it.
I've heard many stories about how someone's family member/friend has gone through this and is a healthy 2/4/9 year old. And that comforts us. The doctor even told us that her godson has this and is a healthy child now. We know Addison will be healthy. What kills us is that she never even had a chance to fight this. She'll have operations right away. At least she won't remember it. We know she will be okay one day. We just don't understand why.
We will keep this updated as we know more information. Here is a link with more information for you if you want it. Hypoplastic Right Heart Syndrome.
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