The diagnosis that changed everything.

This time last year Ryan and I had been married a year and we decided it was time to start trying for a baby, we had no idea just what we were in for. Fast forward 6 months and on the 1^st of June 2023 my pregnancy test showed 2 pink lines.

I cried happy/relieved tears as even 6 months felt like forever when wanting to be pregnant. Patience is not my strongest trait! At 5am I woke up Ryan to tell him our news. To which he casually responded, “I know.” Apparently, my teenage boy appetite and mood swings had given it away! At what I thought was close to 8 weeks, we had our dating scan. I held my breath as the sonographer confirmed our baby’s heartbeat and told me that she was measuring 6 weeks 4 days. I remember being slightly disappointed that my due date went from the 5^th to the 13^th of February as it was one more week to wait. I told you I’m impatient! I had decided right from the beginning not to do the NIPT test at 12 weeks, for 2 reasons; 1.I wasn’t worried about anything being wrong and 2. it wouldn’t change anything, because no matter what we would carry on with this pregnancy. I was told “you won’t need a 12, week scan then.” Every month at my midwife appointment, I heard my baby’s heartbeat which was always normal. As I entered the second trimester, I assumed nothing could go wrong because we made it past 12 weeks!  At 19 weeks 6 days we finally got to have another scan.

We were excited and eager to find out our baby’s gender. I was secretly hoping for a girl, because I love how cute you can dress a little girl, and in my experience as a teacher, they are much more chill in their younger years. Ryan thought it was a boy. We had no idea during our scan that we were about to find out more than just the gender! I remember wondering why the sonographer lady spent so long looking at the heart, which definitely isn’t the cutest thing to look at during a scan! I was eager for her to just get to the gender already. She then casually said “it looks like a little girl”. I was so happy, but this joy was short lived as the sonographer braced herself to tell us that our baby’s heart did not look like it should, which suggested she has a heart condition. She said we will need to fly to Wellington MFM clinic to find out exactly what was wrong. I burst into tears and the sonographer placed a hand on my knee and tried to comfort me as her eyes filled with tears also. I cried most of that day but still decided to share and celebrate our baby girl’s gender, I also brought a little girls baby outfit off Jamie Kay as I didn't want to feel completely robbed.

We knew at that stage that her name was Evangeline- which means messenger of good news/ gospel. From then on, she was no longer baby, but Evangeline. I began to console myself with reassurance that it would be a minor heart condition which at best would repair itself as she grew or at worst result in heart surgery, but either way, she would be okay. We asked everyone I knew to pray. A week later, on the 2^nd of October we flew to Wellington full of hope. That hope was quickly dashed. We had over an hourlong scan. Evangeline was not making it easy, she would not stop moving! I took that as a great sign. But then when the sonographer left the room for a grueling 30 minutes and returned with the doctor who did another 30minutes of scanning without saying a word to us, I knew in my mama heart that we had bad news coming our way. I tried so hard to be brave and not cry. We were then seated in a waiting room, and I couldn’t be brave anymore, I cried and told Ryan, I know that it's bad news. A kind midwife who is used to being there when bad news is delivered to parents, brought me a Milo and consoled us with how sorry she is that we had found ourselves where no parents wanted to be. After another long wait it was time to receive our news. 

We sat in shock as the doctor began listing off about 6 anomalies that were wrong with our baby. He said if it was just a heart condition then we would assume it’s an otherwise healthy baby with a heart condition. But that with all the things combined it would suggest a genetic or chromosomal disorder. He then proceeded to lay out 3 options 1. Termination 2. Amniocentesis (A diagnostic test, where they draw from the amniotic fluid with a small needle to test for T13 (Patau Syndrome) T18 (Edward Syndrome) or T21 (Down Syndrome). 3. Carry on with the pregnancy with monitoring. After some discussion and tears we chose option 2 but informed the doctor that we would be carrying on with the pregnancy no matter what. The kind midwife assured us, that now that they know that they will fully support us in that. 

We had to wait 24hours for the results. I found myself hoping if anything it would be a Down Syndrome diagnosis. I didn’t know much about T18 or T13, but I knew they were severe! 6pm the next day we got the phone call. The kind midwife let us know that our baby had T18 (Edward’s Syndrome), and that in most cases T18 babies won’t make it to birth but if they do most pass within a week and only 5% live beyond a year. She said that on top of  that our baby's severe anomalies means in our case we would be more likely to get less than a week. She reassured us that it was nothing we did, that this happens at conception and there is only a 1% chance of it happening again. I was so upset I couldn’t finish the conversation. At that moment my best friend Amy arrived, with a meal for us and she sat and cried with Ryan and I as we processed a diagnosis, we had personally never heard of until the day before. As the initial tears passed, I went into a state of shock and numbness.

The next day I was searching Facebook for support groups for Edward Syndrome. I begun to build my hope again as I saw stories of babies who were well beyond 1  years old some even as old as 7,  they were happy and loved. I begun to imagine life with a special needs child rather than one of saying goodbye to our baby before or after birth. I found myself seeing this as a better and more hopeful alternative and went into research mode to learn all I could about Evangeline’s diagnosis.

A lot has happened in the past few months we have had many reality checks. We found out just how severe Evangeline’s particular case of Edward Syndrome is, and just how little intervention she will be offered once she is born, which at best can only give us 2 days with her. We have had to accept the very real possibility of Evangeline’s passing and even consider how we will farewell her and whether to bury or cremate. These are things a parent never expects to have to decide. It has been a rollercoaster of emotions, of hoping and then despairing. The thing that gets us through is knowing that God is with us, even now he’s with us and even now he’s for us. We will never be without hope because we hold on to Eternal hope. If she lives, even for a few days, we get to see a real-life miracle but if she doesn’t she goes to be with Jesus, she will never experience pain, or suffering but rather an eternity in the most beautiful place ever with a God who loves her far more than her Daddy and I ever could. “Hope is never lost”.