Imogen’s Birth Story
Written By Renee Arbia
If you have been looking at my social media accounts lately you will notice that there is a new baby in our family. We are very proud to welcome our baby girl Imogen Barbara into our family. I have informed my blogger audience a little bit here and there about my pregnancy but mostly for this pregnancy we have been very quiet, at least for a mom blogger who blogs about her life. There are a few reasons as to why we decided to keep quieter about this pregnancy. First of all it is a second pregnancy so we did not feel it necessary to announce as much, secondly, I am writing a book about this pregnancy that will be out soon, and thirdly and our main reason is that this has been a very hard pregnancy for us and at times it has literally left us speechless as to what to say.
Everything was going great until our 18 week ultrasound. I went to the ultrasound alone, since we did not have a sitter for Xavier. Nick took him out around town for the day and dropped me off at my appointment. We had no idea of the sex of the baby at that point, nor did we intend to find out. The ultrasound was quiet, painless and the technician was very quiet. Perhaps I should have noticed she was a little too quiet. In the waiting room the doctor came in and informed me that our baby had some issues, they found a cystic hygroma (basically a fluid filled cyst) on the back of the head and some fluid around the heart, compared with the short bones in the legs, they informed me that they suspected our little girl had Turner Syndrome. They told me in one sentence that I had a little girl and that she had a syndrome. They informed me to call Nick right away to have him come in so they could explain it to us. Needless to say we were scheduled first thing in the morning with the fetal medicine specialists.
The next morning after four hours in the ultrasound room they had concluded that baby girl did have Turner Syndrome, but that her heart and organs seemed strong. After a long discussion of what Turner Syndrome is and how it is a chromosomal disorder and how extremely rare it is, we learned that only 2% of baby’s with Turner Syndrome make it to term birth. Sadly the majority of baby’s with Turners Syndrome are still born. We had no problem accepting a special needs child into our lives and hearts, nor accepting how rare and precious she really is, but accepting that there was a good possibility that we may lose her was something we just couldn’t accept at 18 weeks along. After doing an amniocentesis we knew for sure she had Turners Syndrome. We decided since she was not suffering but thriving and it was no physical hurt to me to carry her we would proceed on with the pregnancy in hopes that she may be in that 2% to make it to our arms. The extreme rarity that she even had Turners Syndrome and had made it to 18 weeks gave us a lot of hope that we truly had a fighter for a daughter and we wanted her to make the decision to stay or go.
Needless to say it was a LONG rest of pregnancy. We didn’t post about this on social media, there were many reasons. Mainly, how do you put a story like that in a status? Plus, we have hundreds of people on our social media accounts and not all that we respect their opinions and judgments and we were not able to take other’s opinions on the manner at all. Frankly, we didn’t want to hear what others thought of our situation. Some took it too lightly, some too seriously, few got it right. We decided it best to only tell people in person or on the phone if we were close enough to them. Unfortunately, if we only talked through social media, chances are we didn’t tell you. We did not accept gifts for her or set up her room for fear she may not make it. You would think the longer the pregnancy the better her chances, but not so much. We had weekly appointments to check on her and every week was different. Some weeks we jumped and celebrated her progress, other weeks we cried and prayed and hoped she would stay with us. Most weeks were a little of both.
Around June we started to breathe just a little better. She had passed her two fetal echocardiograms with flying colors, and I was told I was able to deliver our baby girl at home in our normal hospital instead of having to give birth to her at UNC. Not that we did not like UNC as they were very helpful and have a great hospital but being that it is three hours away it would have been terribly inconvenient for us. We started celebrating and accepting gifts, getting her room a little ready and some baby stuff out. At 39 weeks they decided we had waited long enough for her and they did not want to wait any longer in case she did have some serious health issues we all thought it best to get her out as soon as we can. So on July 11th I went into the hospital for an induction. Unfortunately, nine hours into hard labor, our baby girl’s heart rate kept dropping with each contraction. Knowing that she may have some heart issues no one was willing to take many more chances with the labor induction so we all decided on a cesarean section. It actually was a pleasant experience and after so many long months wondering if we will ever get to hold our baby girl it was a welcome relief to know that she will be in our arms soon. She was born on July 11, 2016 at 7:39pm and weighed 7pounds, 3 ounces and 18 inches long, we named her Imogen Barbara. Imogen is a name in the play Cymbeline by Shakespeare, my favorite playwright and Barbara is after my mom. The NICU checked her out immediately and she was healthy. She received more ultrasounds and genetic testing the next couple days but she was healthy enough for us to come home on Wednesday.
We have been blissfully enjoying some normalcy finally after a long pregnancy. Imogen is pretty much like a normal baby at this point with only a few differences. She has a few physical features of Turners Syndrome girls (more on those in another post) and we have already been to three doctor’s appointments and have many more on the books. She has a team of doctors that we see a regular Pediatrician, Cardiologist, Urologist and Endocrinologist. Needless to say it keeps our schedule packed. Although she has many doctors she is very healthy. Many are for maintenance and to keep up with her health as she grows and to make sure to combat any issues before they arise. When I look at her it is amazing to me that she is here and so healthy. She is such a miracle, she was most likely not going to make it into this world and today she is here, and she is healthy and happy. We are so very proud of our strong, feisty girl. We have a long road to go with her and it is a road we have no idea of what is around every curve, but we know we are strong enough to face it in our family and we are excited to walk a different path and see all the magic and beauty it has to offer.
~”Just when the caterpillar thought the world was over, she emerged as a butterfly” ~
I started writing a book about my second pregnancy before I was even pregnant. I wanted to write about what goes through mom’s heads when they are pregnant, the good, the bad, the funny, the hungry and everything in between. My book took a very different turn when we found out Imogen was diagnosed with Turners Syndrome and you can read all about it and our feelings on it and how we got to where we are today. Stay tuned for the release date! Our goal is to give hope to other moms pregnant with Turner Syndrome girls or special needs pregnancies. It helped us a lot to hear success stories and see girls who made it to birth. I believe the faith and prayers of us and our friends and family truly are what helped bring our sweet girl into this world. Never lose faith.
To find out more about Turner Syndrome check out their website
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