amanda

Amanda

Mom to Brielle

August 2014

Auburn, Massachusetts

As soon as Teddy and I got married, we wanted to have kids right away. We started trying in October 2013, right after our wedding and we were so happy when we found out that I was pregnant by the end of March 2014. Everything went well during my pregnancy. I never got too sick, I was never too uncomfortable and I loved knowing I was growing a little baby inside of me.

July 8th was the date of our first ultrasound. We were so excited and could not wait to see our baby and of course to find out what we were having! The ultrasound tech was having trouble seeing certain things, mostly because the baby was so curled up in a little ball. So we left disappointed because we still didn’t know what we were having and didn’t know much about our ultrasound. Later that day my midwife called with results. They were concerned that my fluid was low. They then made an appointment for us to see a specialist for another ultrasound to get a better look. We were told to not worry and that they were sure everything was fine. I am a healthy person, always took my prenatal vitamins, and had a completely normal pregnancy so far.

July 22nd was our appointment with the specialist for a follow-up appointment. The weekend before that, we had gone camping and I had a moment alone with the my belly and I suddenly thought, “It’s a girl.” I started saying “she” and “her.” I just knew. Anyway, we went to our appointment so excited and hopeful that we could finally find out what we were having. We thought it was just a routine check because they couldn’t see much with her position last time. Again the tech was having trouble, she even brought in another tech to help her because she couldn’t quite see what she needed. After they were finished, the doctor came in to talk to us about the results. I replay her words in my mind everyday: “There are a lot of issues.” She continued to tell us that our baby has a hole in her heart, a bad kidney and also an extra finger. My stomach sank, my husband and I immediately broke into tears. She explained how this could be a result of the baby either having trisomy 21 (Down syndrome), trisomy 13, or trisomy 18. Both 13 and 18 she explained are very severe and our baby would have many developmental issues and organ issues. Most do not survive longer than a year and some are stillborn. We felt like we were hit with a ton of bricks and that everything just closed in on us. We didn’t understand how this could happen to us and why.

To test the baby, they did an amniotic fluid test. They basically put a giant needle into my belly and took amniotic fluid out of the baby’s sac to be tested. At the end of the appointment we finally found out, it was a little girl. We asked what are her chances that she’s normal and these issues could be fixed for her to have a normal life. We were told the heart could be fixed and one of the kidneys was still working, so she could just have heart surgery and potentially live a normal, good quality life. And of course the finger could  be taken care of too. Even though she warned us that she didn’t think that this test would come back normal, we had lots of high hopes. We left and immediately went to church and prayed and cried. We hoped that this nightmare would go away and our baby would be ok.

Our appointment was on a Tuesday and Thursday we would get our results back. The rest of the week went by and we just felt like zombies. Having to tell those who knew we went for our second ultrasound what had happened was so sad and disappointing. This was suppose to be a happy time in our lives and it turned into one of the saddest. Not only as first-time parents but in our first year of marriage. Thursday finally came. I literally watched my phone all day. I was a nervous wreck and emotionally drained. I work with my husband at his computer repair shop, so fortunately we had each other’s support all day. Finally, (of course at the end of the day) my phone rang and it was our doctor with the results. They were NORMAL! We couldn’t have been happier that our baby might have a chance. The doctor even apologized for being so pessimistic at our last appointment because she was sure it was a trisomy chromosome defect.

Even though the results came out to be normal, there were some of my cells mixed in with the baby’s. Which my doctor didn’t seem concerned about, but she did send it through for some advanced testing to be extra sure. I guess when that happens they automatically put a disclaimer on the results because they could be affected. Even though the results came back normal, we still had to go to a children’s heart specialist to get an echocardiogram of her little heart. The appointment was set for the following day.

On Friday, we went to our echocardiogram. The doctor again had trouble with our baby being curled up, so it took a long time for her to view what she needed. We found out that the baby had ASD [Atrial Septal Defect] and VSD [Ventricular Septal Defect] with possibility of tetralogy of fallot. Since she could not see very well, she didn’t want to name the tetralogy of fallot yet.

She sat us down and explained that there were two holes in her heart and because of the holes the aorta (body artery) was enlarged and squished the pulmonary artery (lung artery). So the artery that went to the lungs was very small. To me this sounded terrible and pretty bad. But the doctor reassured us that it could be fixed with a surgery and live a good quality of life. She would have to see a cardiologist often and it was high risk because of her kidney. But still we had high hopes for our little girl. We thought that she was a fighter and she would get through this and be strong. We were saying it would be our miracle baby.

 August 5th, we had our next appointment for a follow-up with the specialist. I had been drinking a ton of water before this because of my low fluid due to her kidney. So I thought this appointment could be better and that maybe her fluid would be better. We also would get the advanced test results back. Again, we were going in with high hopes but so nervous. We went in and they gave us the ultrasound. We saw her little mouth opening and closing, drinking fluid. She was curled up again, so it was a little hard for them to see.

The doctor came in after the ultrasound, she did not have good news. The results came back that she technically did not have the full trisomy 21, 13, or 18 but there was some extra material on the 13th chromosome. Which could mean a partial trisomy 13 and since it was partial it wouldn’t come through on the first test we had. But she said we could send it in for a micro array to find out where the extra material was coming from on the 13th chromosome. I of course broke down again. All I could say is “I just want this baby so bad.”  So we left knowing that our doctor would call us to let us know when those results would be in. Oh great, more waiting.  

This time our hope was that the extra material was just some fluke thing and she could be ok. But again we were warned that it was not likely because of her other issues. With the trisomy there could be even more issues that would not be seen on ultrasound, which could cause her a very poor quality of life. We went to church and prayed but I mostly cried. My husband had hope still, but I was so drained and sad. I just had no more room for hope.

 The rest of that week I stayed home from work. The next day I couldn’t be alone so I took my dog and went to my mom’s. She took care of me, fed me pancakes and tuna melts. I needed my Mom and her food more than ever. Those who know him know my dog is such a dope, so he helped a lot to keep my spirits up.

That day I felt my baby Brielle move for the first time. I felt flutters before but this was real. My mom could even feel it when she put her hand on my stomach. I felt like this was a sign, she was saying, “It’s not so bad in here mom I’m OK!”

I was waiting to find out when we could get the results of this next test. They told me we wouldn’t get them for 8-11 days. This was a problem. The next week I would be 24 weeks pregnant and our doctor needed a decision from us if we wanted to keep her. 24 weeks is the cut off to terminate a pregnancy, which we didn’t want to do, but we didn’t know if our baby would live more than a year, and within that year she would be suffering. This is common for children with trisomy 13, especially with the issues our baby had.

We were still in denial. We could take care of a disabled child, at least she could die naturally. We were not ready to make this decision. We had looked up many heartwarming stories of those who survived many years after birth with this chromosomal issue, and we thought we could be one of those families.

Another problem, which was the last thing I thought about was my own health. If the baby died in my womb, I could get preeclampsia, liver failure and other really scary things. My husband automatically said that we can’t risk that. Since we could not know for sure if it was trisomy 13 causing these issues, our doctor had made us an appointment at children’s hospital in Boston to get second opinions. It was going to be a long day of ultrasounds and genetic counseling.

The night before our second opinion appointments, I cried so much. This had been normal for me lately. I was waking up in the middle of the night and every morning sobbing. I felt her kicking and all I could think was, “How am I suppose to give up on my baby?” My husband also felt her kick for the first time as well and he felt we couldn’t give up on her either. That night I had the mindset that I can’t end this pregnancy. I love this baby so much already, my heart was so full but so broken.

August 8th, we had our second opinions. We started with a echocardiogram, then a ultrasound, and ended with a meeting with a genetics counselor. What we knew before this is that our baby was measuring small, her heart had two holes, one of her kidneys had cysts and she had an extra finger. At the end of our day at the children’s hospital, we learned that her heart issues  were more severe. She would need multiple surgeries and possibility of heart catheters. Her lung artery and lung valve being so small would also lead to poor lung development. This could lead to needing a lot of work on her lungs as well. We found out that the kidney we knew had cysts on it was so large if was measuring the same size as  a kidney of a baby 5 weeks older. Not only that, but the smaller kidney that they believed to be the working one also had cysts on it. Plus the tissue of the kidneys looked abnormal because it was showing bright white on the screen compared to other parts. She had extra toes and fingers. The umbilical cord was two valves instead of three. These were just the issues that we could see through a ultrasound.

We were told that she was most likely surviving because my body was giving her what she needed; she was surviving off of my resources. The possibility of her having even more issues was very big since her chromosome test did have extra material on chromosome 13.  So after this day, our hopes of a normal child with good quality of life were no longer there. We felt we could make a decision at this point. We did not want our child to suffer. We set up the appointment to end the pregnancy.

Here I am, writing this story the weekend before my surgery. I had set it up on Friday so we had to wait for Monday-Tuesday for our appointment. This has been the worst weekend of my life. I feel her kick and it makes me so sad every time. A lot of crying and looking up stories of other women and couples who have been through this. I have never had surgery before, so I’m terrified. I had a choice of being induced and going through labor or having a D & E surgery. My doctor thinks that the surgery is best for me because going into labor is so emotional and we’ve already been through so much. I will be asleep for the procedure and it won’t take as long. But being 23 weeks, I am so scared that I might have complications. My husband has been my savior. I am so grateful for having him and amazing family/friends for support. Even though we are both heartbroken we feel like we are making the right choice for baby Brielle. She won’t suffer, she will be our little angel. We plan to keep her ashes and spread them in Wells, Maine, where our first vacation together was and where I vacationed growing up with my family.

After surgery there are still a lot of precautions we have to take to make sure we are able to have a healthy baby. We will finally get the test results back to find out about the extra material and where it came from. We will also both have to get tested to make sure it didn’t come from us. If it wasn’t from us, the chances of it happening again are 1-10%. If it did come from us somehow, even though we are genetically normal, we will have to go through fertility procedures to avoid the same complications.

I never thought starting a family would be such a long and painful road but all we can do is continue supporting each other and hope that someday we will have the little family we always wanted. But Brielle will always be our first child, and I will always keep her in my heart.

***

Amanda has written more about Brielle’s story here: http://amandalynnbryant.wix.com/baby-brielle

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Comments

  1. I just wanted to send a hug your way. I can identify with so much of this – we also had to make the horrible decision to terminate in the second trimester due to medical reasons and it was by far the hardest thing I have ever had to do. No one should have to go through this. It was almost a year ago for us (end of March 2014) and I still miss my baby every day and assume that I always will. I hope you and your husband are doing alright and I wish the best for you. Thank you for sharing your story.

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