a level 2 ultra sound and a possible amnio. That was one of the longest weekend of my life. I tried so hard not to get worried and not to let on that I knew as to not shatter Billy's hopes and dreams. I could not hide it from him, I got on the Internet to find out what the odds of a false positive were, how they read the tests and who tests positive. With each article I grew more and more sure that we were not looking at a less than 1% chance we were looking at a 85% chance that this test was going to be accurate. Billy and I fought that night, I cried like crazy (the only time I cried with the unknown), he thought I was over reacting and that I would somehow "will" us into having problems. I was looking to him for support and to help him to understand what all these numbers meant, and to let on to him that I already knew. I did not want it to be a "shock" I wanted him to be prepared.Monday came and we set out to Eugene, I met Billy there and we sat nervously awaiting our appointment. The first person we met with was a genetic councilor who sat down with us and explained everything I had recently learned on the Internet, and took some vital family history. She explained to us that we would be first looking at the baby for what they call soft markers, things like short or no nasal bone, thickening in the neck, brain, and heart conditions, etc. If those came back clear we had a better chance that our baby would not have DS, if they were to find soft markers we decided that it would be best to get an amnio given or increased odds, as well as one can never be too prepared.
Watching the monitor and seeing our adorable little angel doing barrel rolls and squirming so much that the ultra sound tech had a difficult time with measurements, was such a happy thing. It was a little relieving to me since I had not felt her move yet. We were told right away, it is a girl, and that brought the first set of "ok" not what we were hoping for but it is fine she will be loved regardless and now we know "god does not want us to have Billy Roy 4th". So the ultra sound continued pictures were taken. The hope's were still there for us, she did mention that the brain ventricles were enlarged but the doctor would go over that with us.
The doctor entered the room and started scanning as well, he checked out the brain and again the heart. That is when the bomb dropped. He explained to us that what we were seeing was not normal, and not what they consider to be viable fetus. He explained that there was 3 times the normal amount of fluid in and around our babies brain, he explained that the ventricles were so enlarged that IF this baby made it to term she would be totally brain dead. Then he moved onto the heart and said that the heart was defected as well, and even if the heart was operable the diagnosis of a chromosome disorder with the brain issue this baby would never be able to tolerate a surgery nor would it improve her quality of life, which they expected to be none, again if she survived. They wanted us to consider termination. They felt with the two major defects and the quad screen the most likely cause was trisomy 13 or 18. We would need an amnio to confirm. After the amnio I knew the risks of miscarriage were increased to 50%, I found myself praying that i would be in that 50%, I just wanted god to take her away so I would not have to make any decisions. How could I make a choice like that, it is not up to me, it is up to God if my baby survives. Right?
Termination, "what is this even an option?". We got the tests knowing, saying no matter what we would bring this baby into this world and love her, this was not an option, I did not think in a million years could anyone tell me anything that would even allow me to say maybe or speak the word out loud. As we walked away, that was the first thing we spoke of, lets just get it over with. They said it is inevitable right, this baby was going to die, that she had no chance of survival, and if for some reason she did she would suffer with no quality of life. So lets not delay the inevitable, we can try again.
As the shock started to wear off I started researching, I had never heard of these conditions, nor the disorders t13 or t18, I need more information, what if they are wrong. I ultimately found that 95% of babies with this disorder do not make it to term, the other 5% live 1 - 10 days. I did some reading on the enlarged ventricles and hydrocephalus, I found that depending on the cause that it can lead to catastrophic cranial enlargement, severe or total brain deterioration, or death. This was not enough for me, is there any situation where this resolves itself. I found there are several causes to this condition, two of the most common are malformation and blockage. Both of these causes can and do resolve themselves. So the next question is what caused our babies condition. I decided I would want to carry her to term or as long as possible if she had t13 or t18 so that we could say goodbye and show her as much love as possible in the moments we had with her. We got our FISH results back from the amnio 3 days later, this news I was hoping would help me to know better what to do. The FISH ruled out t13 and t18. Was this good news, I do not know, I found myself praying for this because I knew the odds of the baby survival was limited but it would be something that was inevitable and I would be able to leave in gods hands. Now we are faced with a Down Syndrome baby with severe birth defects, do we take a chance and let this baby continue to grow and just pray that the conditions are not severely debilitating or fatal or do we terminate because the prognosis is still so grim that they gave her a range of development between vegetative state and infant. Then I was told that I needed to make the decision because if we were somehow able to bring this baby into the world breathing her care would no longer be our choice. Her fate would be in the hands of doctors who might chose to prolong her life, a life with no quality, no function, no purpose, nothing but suffering. We did not want our baby to suffer. It would be pointless, it would be selfish, it would destroy us. So here we are again, back to having to make a choice. We had 8 weeks to decide, 8 weeks to allow our baby's condition to change.
Billy was grieving he had lost a child again, he knew what we had to do and had made the mental process to do it. I on the other hand had started to feel her move for the first time, she was telling me I am here, I am alive, do not give up on me. So now my focus shifted onto Down Syndrome, what are the chance and odds that the problems and defects she had are going to resolve and be ok. I needed to see our baby again, I needed someone else to see our baby and get every test imaginable. We had to wait 2 1/2 weeks before they could see us again. It was the most agonizing 2 1/2 weeks of my entire life. My mantra began "keep hope alive" I found myself telling Billy, even being angry at times with him that he was grieving a child that was still very much alive. She was inside of me moving and growing and she was with us, stop grieving she is here. We must have hope. I am not giving up HOPE.
I know my husband was so concerned for me, concerned that the more hope I had the harder the fall would be when it came time to give up. He was worried I would never be the same, I would never recover from losing a child.
During this time I prayed and prayed, I reached out to everyone I knew for prayers, "please above all just pray that I do not have to make the most profound decision I would ever have to make in my life". If it is God's will that this baby not walk with us on this earth but to be born into heaven let her go there, but please do not make me be the one to stop her beating heart.
I had everything planned from the way I would be induced to how she would be remembered. I had all arrangements made for her being blessed and having a photographer there to take pictures of our little angel. We would have casts made of her tiny hands and feet, we would have her little footprints tattooed on our bodies to carry her with us everywhere. It was so difficult to make these preparations at the same time as praying and hoping that they were wrong or that a miracle would happen. I knew I had a limited amount of time and that I wanted nothing to be forgotten nor did i want to make any decisions after "the choice" had been made.
We had our second level 2 ultra sound a week and a half before they recommended but I knew I needed a second opinion and could not sit around and wait, there had to be more clear tests that could be done anything to give me more of a concrete 100% yes this termination has to be done. I could not live with myself if I did not know 100% that I made the right choice.
Going back to the perinatologist was so somber, so scary, ten times worse than before, I just knew I was going to leave with no better of a clue as to what needed to be done. I knew they were going to say there has been no change it is still up to you.
I remember looking at the monitor and the first thing i saw was gray matter where the black fluid had previously been, I turned to billy and said "do you see that" with even more hope in my heart, he had a hard time looking. His reply was "it's going to be the heart". We watched our baby for the 45 min it took to measure every inch of her, and the what seemed like hundreds of pictures they took of her heart. The doctor finally came into the room. He looked at our baby for a few min before he spoke and what happened next is nothing short of a miracle. "well" he says, this is her right and left ventricles of her brain and it appears that they are within normal range for a child with down syndrome. WHAT!!!! come again, did you just say NORMAL????? then he moved onto her heart and without much explanation of what he saw he was pulled away by another patient. We left the exam room to a conference room where he later joined us. But before he joined us the councilor (who was somewhat stuttering)attempted to tell us how the two doctors could come away with such different diagnosis'. All the while I was thinking I "know" God is a healer, he preforms miracles, he answers prayers.
So now we are looking at a baby who has a 95% chance that she will have normal brain function, and when the doctor returns more shocking elating news. MILD at BEST!!! these are the words that he used to describe her heart. Yes it is defected and may possibly need treatment,but the prognosis was good, that the defect is very common and they will know more in a few weeks when an echo could be done.
We left the office in complete astonishment, we are going to be fine Hope is going to be fine, we do not have to make any major choices, we are going to leave it in god's hands and he will watch over us. How blessed are we? We are going to have a little angel that will touch every person she comes in contact with , we are so blessed to be given this gift. Yes it is not going to be easy but we are ready, we know god has prepared us for this moment. He has given us the strength, the perseverance, the heart to provide and care for our most precious gift.
I am now 27w 3 days. We had the echo done last week. Our little Hope has a very common condition called an AV canal defect. Essentially it is a hole in her heart that is affecting all four chambers and valves. Her heart is not pumping blood in one side out the other, it is just free flowing through the chambers. She is going to require Open Heart Surgery when she is about 3-4 months old. This is not good news for us but not unexpected. I feel so blessed so far that it is the only complication we are looking at, so far. She is continuing to gain weight in utero and all of her internal functions are good. We will need to keep praying that she thrives and is super strong. We need her to go to close to term as possible and be able to eat really good when she is born that way when she has to have the surgery she will be super strong and fight a good fight to recover with no speed bumps. I can not wait to see her little face.
