Final Analiese update

2015 has been the biggest emotional roller-coaster of my life. The year began great with college, finding a fantastic job that I love, and FINALLY taking a vacation with my husband for the first time. I got to visit Disney World, Harry Potter World (better known as Universal Studios for those that aren’t obsessed), and see my best friend in her new home in Florida. If you had told me then that I would end the year this way, I would have called you a liar.

Shortly after our vacation, Stefan and I found out we were pregnant. We had been trying and were so ridiculously excited. The amount of joy in our home was off the charts. We are trying to find some joy in the rest of the pregnancy, but it is hard. When most families are excited about the end of pregnancy drawing near and FINALLY meeting their babies, Stefan and I are terrified. I want to stay pregnant forever, because while I’m pregnant, my daughter is still alive. There’s no guarantee that she won’t self-abort near the end of the pregnancy, but her chances in utero are a hell of a lot better than after birth.

This will probably be the last medical update on Analiese until I post and let you know about her birth, and her passing. Stefan and I went to the Children’s National Hospital yesterday. It’s the best children’s hospital north of Scottish Rite in Atlanta, and we were there 9 hours having tests done and discussing our case with the various specialists. Pretty much every question we could possibly come up with was answered yesterday, and so the future is a lot more clear than it was, although entirely heartbreaking.

We had a fetal MRI, ultrasound, and another fetal echo-cardiogram done yesterday. The fetal MRI took in depth pictures of Analiese’s brain, and was able to photograph other organs that have been not been clear in ultrasounds. The ultrasound gave another perspective of all of her organs, and the fetal-echo gave us the information about her heart. It isn’t good news.

Analiese has 3 heart defects called Tricuspid Valve Atresia, Ventricular Septal Defect, and Hypoplastic Right Ventricle. Basically, this all means that her right ventricle didn’t form, and there is an extra hole in her heart that is allowing the blue and red blood to cross. There’s a bunch of other medical mumbo-jumbo that you all can feel free to google, but the moral of the story is it would take 2 surgeries to fix. If this was the only thing wrong with her, then I would be writing an entirely different blog post right now. But it isn’t.

The MRI showed us everything else that is wrong with Analiese. She has a midline brain defect called A Genesis of the Corpus Collosum. Basically that means that the connections between the left and right hemisphere didn’t form, and the two sides of her brain are not talking to each other. Her brain also hasn’t formed correctly. In a normal infant, the brain begins as a smooth surface, and during development it folds on itself symmetrically over and over. Her brain began folding, but it does not have the amount of folds that they see in normal brains. It appears as though her brain development is multiple weeks behind. If this happened in an otherwise perfectly healthy child, that child would have severe mental retardations, and likely would never be able to do anything independently. Her brain is also smaller than it should be at almost 32 weeks.

Analiese has also developed plural effusions (hydrops) in her chest around her lungs. Her lungs are much smaller than they should be, and her chest is very narrow. Too narrow to accommodate mature lungs. Her lungs will likely never mature enough to be able to support life.

We have known about her left kidney being cystic, but her right kidney has also developed a cyst. Due to the amniotic fluid being almost non-existent, the doctors believe that her kidneys are no longer functioning at all.

All of this can be linked back to her genetic abnormality diagnosis of Trisomy 10 Q. The doctors are still surprised that she has survived this long with such a large piece of extra genetic material. Before our appointment yesterday, we believed that the only thing that was killing her was her heart defect. We now know that isn’t true. If she survives until birth, she may not take a single breath. The plural effusions are concerning, because it means that organ systems are shutting down. IF more begin to form, then that could be a sign that she is about to self-abort. We are also at risk of not having any warning until the doctor cannot find her heart-beat. And with all of these organ systems not functioning and not forming, the best we can hope for is a few breaths at most.

This is our reality. We are trying to find joy in the moments we have with our precious daughter. But it is hard. 2016 is going to begin with emotional turmoil and trauma and there is nothing that we can do to change it. All we can do now is love our little girl for as long as humanly possible. I go for weekly ultrasounds to check in on her and make sure she is still fighting, but we are not likely to find out any more new information. We will have a memorial for her with our friends and family, but probably not until the summer. Stefan and I need time together, alone, to grieve and to deal with our heartbreak. Thank you all for supporting us and keeping us in your thoughts.

An Update on Analiese

Not much has changed throughout the last 4 weeks for Analiese (pronounced AH-nah-lee-sah), but we have a few things to update everyone on.

Analiese is now about 5 weeks behind in growth. I’m 28 weeks pregnant, and she is measuring around the size of a 23 weeks old. So that indicates she is still growing, but at about half the rate she should.

At my 26 week appointment, the Wednesday before Thanksgiving, Dr Sweeney showed concern that Analiese had entered into heart failure. He based his concern on indicators such as a thickened heart muscle, and a build up of fluid in the chest around the heart. He also noted that her blood pressure in the umbilical cord was still at a normal level, which is odd for heart failure indicators. I requested that we see a fetal cardiologist to verify the heart issues, and saw him on Wednesday December 2nd.

During the fetal echo, the cardiologist explained all the things he saw wrong with the heart. There’s a lot of technical, medical information that I don’t exactly understand, so I’m going to dumb it down for everyone. Basically the diagnosis of TOF was incorrect. Analiese has a severe congenital heart defect that shows in multiple areas. Her right ventricle is sealed off from the left ventricle, and one of the valves didn’t form. The other two valves switched places and her right aorta is about half the size of what it should be.  The reason that her heart is still functioning at a normal level and pressure is because of the little hole in the top of the heart that everyone is born with. It is allowing blood to flow to her lungs and the rest of her body that isn’t receiving blood flow from the normal workforce of the heart.

All this means that from a cardiovascular standpoint, there is no reason for Analiese to spontaneously miscarry, and she should be able to survive labor and delivery. The trouble begins when she is separated from the hormones the placenta is providing to her that keeps the tiny hole open. Once she no longer receives those hormones the hole in her heart will begin to close, and at that point it will only be a matter of time before she passes. The cardiologist indicated that it normally takes a minimum of 6 hours.

I asked him if there was any surgical options for us, and he said no. The surgery to fix her heart problems is done in 3 parts, and each part is extremely dangerous for an otherwise perfectly healthy baby. He said that with the genetic factors that Analiese has, that she would not be a candidate for the surgery.

It has been a hard week for me and for Stefan. On one hand, we are so thankful that it seems as though we are guaranteed to meet our baby girl, but knowing that she will only be with us for a short amount of time is devastating. We are spending the time we have with her right now, and trying to focus on the joy we feel when she moves around and kicks.

Thank you so much for the love and support that has poured out on us in the last 4 weeks. We appreciate the fact that you all have respected our need for privacy to deal with this and try to prepare ourselves as much as possible. We don’t know exactly what the next 12 weeks hold, but as we receive more information we will update you all.