DISCLAIMER: Alright, so this isn't the first time Im sharing this story, but its the first time since our life has gone public. The last blog post I did about my prenatal story and how relentless the doctors were about terminating based on my diagnosis received A LOT of hate. I was told that because of the place of privilege from which I speak from, I pretty much shouldn't have a say in the matter. As if having a wealthy family to help you, or not having help is a reason to terminate any life. So if me choosing to love and carry to term a pregnancy that was "doomed" by doctors from the start offends you, then stop reading. Because you will NOT change my opinion on the value of life. I speak for those who cannot speak for themselves because they aren't valued. And if that offends you, then I really don't know why you're following me.
NOW... lets get to the good stuff.
Brian and I married on memorial day weekend in 2015. Shortly after we began our journey with the army, and in August we found out we were pregnant. Towards the end of September (around 13 weeks pregnant) I came home from grocery shopping one day, and looked down and I was loosing lots of blood. I drove myself to my OB, where they performed an emergency ultrasound. (This was the beginning of fighting for my child's right to live.) After an incompetent nurse couldn't find the heartbeat on the doppler she told me "oh it died". After I freaked out, she said that she meant the batteries in the doppler. So I demanded to see a professional and have an ultrasound. They were able to find a heart beat and the baby looked healthy, but I had just received our results for the chromosome test, (something we only did so that we could find out the gender before Brian left for BCT because we would have no communication).
The results of this test are not always accurate. A lot of people receive false positives, and false negatives because the test is a screening of the placenta blood rather than the amniotic fluid. And because I was having complications with my placenta, I was warned that the test could have been a false positive, but I wouldn't know for sure until I did an amnio. Something I didn't want to do because of the higher chance of a miscarriage and I was already having complications.
After the exam, they told me that my cervix was open and because my baby could potentially have down syndrome I would most likely miscarry before I could make it to full term, so they weren't going to "artificially preserve her life" by stitching my cervix closed. So this began my bed rest. ( Now if you think I am "playing God" by trying to save my pregnancy from a miscarriage, then what is your argument for doctors and modern medicine? Or Firefighters, or nurses? Or Cops? Saving a life is not playing God. And I'm sure if you were the one needing your life saved you wouldn't consider it a crime.)
Bed rest followed until I was about 20ish weeks pregnant. I bled most if not all of this time. Brian had left for the next 8 months at this time. Because of the positive screening, they ran extra tests. My NT ultrasound came back normal, no markers for Down Syndrome. My anatomy scan came back normal other than a small focal point, which had I not done the genetic test they would have dismissed as a soft marker. So to be safe I was sent to a specialist at USC Hospital in Pasadena. I was first briefed by a very cold and robotic genetic counselor. I was made aware of my options, and repeatedly asked to do further testing to get a concrete diagnosis before it was "too late". A CVS and an Amnio. I declined. Then I saw the fetal heart specialist. I wish I could remember his name, but I will forever remember his face. As I laid on that cold hospital bed in that dark ultrasound room, shaking from nerves, he approached my case with absolutely no care in the world. "Now, you're farther along than normal gestation for an amnio, but if you're worried we can do an Emergency procedure and I can rush your results so you have time...". We had not even done the ultrasound at this point. I declined again. He began the vaginal ultrasound. Now I can't read anything on those things, but I immediately knew something was wrong. With my basic knowledge of the human body, I knew both halves of the heart should be very similar in size. Adeline's were not. One was significantly smaller than the other. As if it was just not going to develop. I instantly started crying.
"Because we don't know if you're fetus has Trisomy 21, there are a few different reasonings for this heart issue. Now if it is normal, then the heart could possible develop later on in utero. But if the fetus does have T21 then you're looking at some major heart issues. If it can even survive a stressful birth with this heart, it would then need to undergo open heart surgery or a transplant. And thats if you make it to full term. But theres no way to know for sure without an amnio."
I didn't speak much after that. I cried a lot. My mom held my hand and prayed the whole time. I don't remember much of what went through my head, other than fear. Fear of losing her before i even got to meet her. Fear of meeting her and not getting a chance to be her mom. Just Fear. And sorrow. Sadness that this perfect living little girl who I had grown so attached to was being talked about as if she was already dead. This was the point where I decided I need to "know for sure". So out of fear, I consented to an Emergency Amnio.
"I know you said no to terminating, but no one would blame you. Having kids is hard, having kids with special needs is even harder. Its going to be all about doctors visits, and surgeries...." Im sure he went on and on as that long painful needles was pierced through my stomach into the warm safe home my daughter was living in...but i tuned him out. I just cried and prayed, Prayed that her heart would heal, prayed that the needle wouldn't hurt her, prayed that I wouldn't miscarry. Prayed that she would get to live. Prayed that something would be wrong with me instead. If it was between her living or me... that it would be her.
It would be about 2 weeks before we would find out the results. "My office will call you with the results, unless there are other findings". Then that was it. I remember sitting in the passenger seat as my mom drove us home, and I felt numb. She asked me how I felt, and I remember saying something along the lines of "I just know she doesn't have Down Syndrome. She'll be fine." Im not sure if this "peace" I had was my way of dealing with everything I had just heard, or if i was going through the denial part of this healing process.
On December 15th, the phone rang. It was my OB. " Hi, Hannah. We have your results from USC and your OB would like to meet with you tomorrow to discuss some other findings". Silence. "What other findings? I was supposed to get a call to confirm or deny the T21 diagnosis." Silence. "Uhhh...yesss...welll... I cannot tell you this over the phone, and the Doctor really needs to discuss the other findings with you in person, but he isn't available until tomorrow afternoon." Loud Silence. "Hmmm. ok. Then ill be there tomorrow. Goodbye."
Tears. Hot, burning, tears. What other findings can be picked up by an amnio? Google became my biggest enemy that day. Cancer, Fatal Diseases...the list just got scarier as I kept researching.
Those next 24 hours was full of anger, fear, acceptance. I remember being so mad at God. I promised Him that if He took her from me, i would never speak to Him again. Then I read Hannah's prayer to God in Samuel.
10 Hannah was in deep anguish, crying bitterly as she prayed to the Lord. 11 And she made this vow: “O Lord of Heaven’s Armies, if you will look upon my sorrow and answer my prayer and give me a son, then I will give him back to you. He will be yours for his entire lifetime, and as a sign that he has been dedicated to the Lord, his hair will never be cut.[b]”- 1 Samuel 1:10-11
My prayer became like a bargain. A plea. A trade. Never in my life have I felt the need to actually get down on my knees and plead a prayer to God. He usually always meets me where I am at. But this time was different. I had never in my life prayed so hard, so passionately and so serious. My life was not my own. I was ready to give it up. To lay it down in exchange for my babes health. My life for hers. This is the moment I became a mother. A love I have never in my life experienced took over me. And by the end of the night, I was at peace with dying.
Now I know all this sounds so morbid and sad, and a little dramatic. But add some intense pregnancy hormones, my hormone imbalance, these dramatic situations, and an absent husband and you get an irrational woman. Plus 24 hours to mull over every possible bad scenario would make anyone crazy. But I truly believe that I needed to spend those 24 hours in the darkest hole I had even been in to come face to face with the reality I was about to be given.
December 16th, 2015. " Now I know you say you don't plan on terminating, However.... Your results show that your daughter does have Trisomy 21....Down Syndrome". I waited... and waited... and still nothing....
"Thats it? Thats all the results say?"
"And theres nothing else? No other findings?"
"I...uhhh... Are you okay? I know this can be shocking. I have a cousin who has Down Syndrome and he's the favorite of the family. They are just so happy....." insert a bunch of non sense about how all people with down syndrome are the same happy go lucky people.
"Yeah, Im fine. I have worked with people who have Down Syndrome. Their the best. Im not worried."
I think my lack of emotion shocked him. And I think I shocked myself. Everyone I had talked to before we knew the amnio results, always shared with me how they had to go through a grieving process. The angry stage, before they could reach acceptance. I always waited for that part to hit me. But it never did. Now i know that part of the healing process is very important for a lot of people. Its necessary for most if not all. But because of my unique situation, after those past 24 hours, receiving "just" a Down Syndrome Diagnosis was my best case scenario. I was getting a shot at life with her. It was going to be a fight, but it was going to be worth it.
A few short days after all this, Brian came home for 2 weeks for Christmas leave. He didn't know anything that had happened over the last few weeks. I remember being so nervous to tell him. I didn't know how, I didn't know when. But I will never forget his response.
"So babe... while you were gone they found some things wrong with the baby. I had to see a fetal specialist, and there are some issues concerning her heart which resulted in me getting an Amnio to determine if she will have down syndrome or not... And she does."
"Soo... our child isn't going to be "normal".
"Hannah... we already knew that. Me and you are the farthest things from normal... but she's ours and thats all that matters. Normals boring anyways"
And that ladies and gentlemen... is why I love this man.
While he was home, possibly 3 weeks after I had received the positive diagnosis, we were sent to Children's Hospital LA to meet with a team of fetal specialist who would do extensive ultrasounds on all of Adalines body. Mainly the heart, since that was our biggest concern. I remembering being so at peace, and once again just felt like she would be fine. After 3 hours of ultrasounds. the doctors came to me and asked me why I was there. I told them my daughter has down syndrome and they are concerned about her health. Somehow, ( All glory to Jesus Christ) in the past month from when the amnio was performed and her heart was clearly not developing, to this point and time, EVERYTHING was working as it should. He told me had I not done an amnio he would not believe he was looking at the organs and fetal development of a T21 pregnancy. My baby was healed.
The next 10 weeks or so were a breeze. I finally got to enjoy my pregnancy and prepare for her arrival. Labor and Delivery was the best and worst experience ever. I was not nervous or scared at all. I was so calm and excited and so ready to meet this girl who had already changed my life. She was taken from me right away and put in the NICU, but mostly because of an infection she had because I had gotten sick towards the end of my pregnancy from traveling across country to Brians graduation, and transfer to AIT.
Now, if Im being honest, I still didn't believe Adaline had down syndrome after the diagnosis. I honestly don't think I was in denial. I just think I was uneducated. I was really denying all of the stigmas I knew about Down Syndrome. Down Syndrome has never been and never will be, a way I describe my daughter. She is Adaline Grace. She is strong. She is a fighter. She is love. She is joy. She is flawless. So what...she has 3 copies of the 21st Chromosome. She is healthy, and loved and ambitious. She is changing the world. She is Adaline.