It has been quite some time since my last blog post, but here it goes!
I learned that we were expecting our second child when I was just 4 weeks pregnant. The symptoms began immediately and I just KNEW what was happening, and after an at home test and a Dr. visit we received our confirmation. Baby #2 was on their way! Our little Ali would be a big sister!!
Of course, it became a bittersweet moment. While there was joy and excitement, there was also fear and uncertainty. Due to our previous losses there was still much anxiety about me carrying another child, just as there had been the entire time I carried Alixandria. So we decided to hold off on letting EVERYONE know until I had been further along, and tried to remain as positive as possible. We didn’t necessarily have an exact time of when this would be, but we took it all a day at a time, telling those closest to us first.
The days and weeks rolled on and pregnancy seemed to begin to fly by. At 12-13 weeks I was given a blood test for different genetic defects, and was also advised they would determine the sex at that time. I anxiously awaited the phone call with all of the results, and then it came after 7 long days (what seemed like FOREVER). Results were negative for any of those particular defects, and we learned……….
I picked up my daughter from the babysitter that day and told her she was going to have a baby brother! Now, just a day or so prior to this she looked at me as we were getting dressed and said “Mommy I want a sister, so you better not have a boy! Ok?”…… I didn’t exactly know how to explain to her that mommy was not in charge of that decision necessarily, so her initial reaction was not excitement. She looked at me with such shock and disappointment, stormed out of the babysitter’s home, and didn’t speak to me the rest of the car ride. LOL I’d hoped that resentment didn’t continue on, and of course it did not.
As the days went on and I began to plan and get things for the little one, and my belly began to grow, Ali’s excitement grew right along with him. She said (and still says) constantly how she wants to help with him, how much she loves him, and even tries talking to him through my belly button.
Time kept flying by and here it was, our 20 week scan. Half way there! Again, both fear and anxiety as well as excitement and joy were felt as we waited. The sonographer began to do the ultrasound. Brain looked great, spine looked great, organs and their blood flow looked great, confirmed sex of the baby, and heart looked great. I felt a huge weight lift off my shoulders. There had been a slight fear that he may have a heart defect such as Ali did, although hers closed around 3 years old. We had been told during an ultrasound with her that she had what is called VSD, it was not necessarily a “big concern”, but they would monitor and have us meet with a heart specialist when she was born. So there was a fear of another case of VSD or even some other heart defect in him as well.
VSD “A ventricular septal defect is a defect in the ventricular septum, the wall dividing the left and right ventricles of the heart. The extent of the opening may vary from pin size to complete absence of the ventricular septum, creating one common ventricle” – Wikipedia
I thought everything was done. Now we were on to the fun part, seeing his little face and all his little fingers and toes. Then the sonographer asked if there were any known defects in the families. I didn’t understand. I quickly stated “No”, and the anxiety began to prevail over all other emotions. “Why did she just ask me that?… I thought everything was fine.” She finished the ultrasound and advised the Dr. would be in shortly to see me. The Dr. came in the room, went over what I thought was all of the information and then it happened. She looked at me and said “We were unable to see the lower half of your son’s left arm on the ultrasound.. we are not exactly sure what this means at this time….. blah blah blah (my heart sank and the room began to spin and I cannot remember much else other than)…. I think that you should get an Amniocentesis done NOW.”
“Amniocentesis (also referred to as amniotic fluid test or AFT) is a medical procedure used in prenatal diagnosis of chromosomal abnormalities and fetal infections, and also used for sex determination in which a small amount of amniotic fluid, which contains fetal tissues, is sampled from the amniotic sac surrounding a developing fetus, and the fetal DNA is examined for genetic abnormalities” – Wikipedia
I got the procedure done as the Dr. ordered and left the office in a zombie-like state. Both in pain mentally and physically. I couldn’t do anything but cry upon arriving home. The thoughts began to race. “How is he going to hold his bottle? How is he going to play with Ali? How is he going to tie his shoes or play any sports? How is he going to live ‘normally’? How did this happen? What did I do wrong?” After allowing myself to rest as instructed and grieve for some time, I decided to look up any information that I could. I remembered hearing “This could be a case of ABS”. I Googled ABS, I reached out to people on a Mommy group on Facebook that I am in to see if anyone had experienced this. I hoped that it was all just a misunderstanding and maybe he was just hiding his arm, and just tried to gather any information I could until the Dr. had some answers for me.
“Amniotic Band Syndrome occurs when the unborn baby (fetus) becomes entangled in fibrous string-like amniotic bands in the womb, restricting blood flow and affecting the baby’s development. Amniotic Band Syndrome can cause a number of different birth defects depending on which body part(s) is affected. If a band wraps tightly around a limb, the limb can actually be completely amputated. The baby may be born missing fingers, toes, part of an arm or leg. If the band is across the baby’s face it can cause cleft lip and palate. In a large number of cases the baby is also born with clubfeet. ABS is also the cause of numerous miscarriages, such as when a band becomes wrapped around the umbilical cord.
ABS occurs randomly. It’s not genetic, nor is it caused by anything a pregnant Mom did or didn’t do during pregnancy. To date, no prenatal factors have been associated with ABS. It is extremely unlikely that ABS will affect a future pregnancy.” –Amnioticbandsyndrome.com
I was able to receive some information from some wonderful people as well as become a part of some tremendous groups, one of which is The Lucky Fin Project http://luckyfinproject.org/
I shared my story and was given some advise from those who had experienced similar things, as well as received many private messages from those wanting to send videos and pictures of themselves or their children along with words of encouragement for me. I realized that all of these messages had the same hidden message for me,“This is not the end, only a beautiful beginning.” My spirits began to lift and I felt a strong sense of hope, especially after speaking with my daughter. I tried to explain to her what was going on with her little brother since she had been in the room at the time of the appointment as well. Her response to me is what gave me that final push in understanding this was not about me and my feelings as I had made it into. She looked at me so innocently and said “But Mommy he can just use his other hand right?…… I still want to feed him, and hug him, kiss him, and take him to Wal Mart with us”. In that moment I sat back and really analyzed everything. Here I was trying to explain to my almost 4 year old that her brother may be a little “different”. I was trying to prepare her for something that she didn’t see as an issue in the first place, and I too needed to see the positivity in all of this.
This was the outlook that I wanted to hold onto. That awareness, understanding, and unconditional love that no matter what they are PERFECT and they are LOVED. We all are. I want to continue to encourage this within them as they grow, as well as bring some awareness to those around us since this is not something many people know about. Now in doing this research and reaching out to those around me, I was also given some information today from Molly at The Lucky Fin Project about Symbrachydactyly. She read my story and believed that this was the case in regards to my son. Another door opened, more research for me until we get some true answers upon his arrival, and more for me to share with those around me in hopes of bringing awareness!! YAY! She advised that Symbrachydactyly is commonly misdiagnosed as ABS since they appear to be quite similar. This is usually the case when no bands are found and only one limb is affected, which appears to be what is going on with Xavier. “Symbrachydactyly occurs predominantly in males, approximately 73%. The condition is usual unilateral with the left side alone involved in 667% of cases, the right side in 27%, and 1% to 7% bilateral.” (jhandsurg.org)
“Symbrachydactyly (sim-brak”e-dak’ti-le) is a congenital (present at birth) hand disorder characterized by abnormally short fingers that are sometimes webbed or conjoined. Symbrachydactyly occurs during normal embryonic development. When a baby’s hand begins to in utero, they are shaped like mittens or paddles. Then the fingers divide. In babies with Symbrachydactyly, the fingers (and in more severe cases the hand and arm) don’t fully form during this time. This may happen because the area doesn’t get enough blood flow or because of some other problem with the tissue. Symbrachydactyly is often misdiagnosed as ABS.” – http://luckyfinproject.org/
It is WONDERFUL to have some possible answers about Xavier’s Limb Difference, gain some knowledge and awareness about Limb Differences and some of their causes as I had none before, (and I am sure many around me did not either), as well as the opportunity to meet some TREMENDOUS people along the way. Although most I may never see in person; just watching the videos, and reading their stories has shown me we are connected in many ways than one, and that my family is not alone as I originally believed to be true. That in itself has been a beautiful reward.
People say that “Things happen for a reason”, and quite honestly they truly do. I had to remind myself that the key to your outcome is your own attitude and outlook. Although I had so many emotions and questions spiraling around me, I had to make a decision. Either go through the rest of my pregnancy and / or longer with an attitude that life is happening to me and miss out on SO many moments, OR see the purpose in this. My purpose in this. This a reminder that things could ALWAYS be worse. I needed that reminder since more than half of my life thus far has been spent worrying and obsessing over things that I cannot change, things I have NO CONTROL over thanks to my anxiety. No matter what I cannot change this situation or wish it away, normally this would drive me into a spiraling pit of insanity, BUT honestly I would not want to change any of this (anymore). I can admit that I do have moments of fear and some grief, and I understand that it may continue periodically, but then I feel those kicks and it pulls me back to where I need to be.
Whether this a case of ABS, OR Symbrachydactyly little Xavier is loved, all 5 fingers and 10 little toes, and he will be an AMAZING, mischievous little boy just like any other. He will do all that we do and more and he has taught me SO much already without even knowing it. I can only imagine what else is in store. And most importantly, Ali is SO ready to be a big sister ! !