First of all I want to THANK you all for your best wishes, phone calls and messages on the birth of our little angels.
Usually my posts are on behalf of Amit and I and I hope this one captures how the two of us feel too. I decided to write this post because there is a lot to say and sometimes writing can be therapeutic. Amit and I tried long to have a baby and early this year we were blessed with the news that we were pregnant not only with one but with identical twins. Since neither of us have twins in our family this was a surprise but as the doctor said it has to start somewhere. We were told our due date was February 8th but with twins that means nothing. The doctor told me she would be happy if I made it to 30 weeks which was the beginning of December. Thanks to some other complications I was seeing my OB and a Maternal Fetal Doctor to monitor my progress.
After a relatively smooth pregnancy (besides the huge belly and getting tired) on December 27th during a weekly appointment my blood pressure shot up. My MNF doctor finished the Sono and told us to head straight to the hospital. I knew there was a possibility these babies would come early but I couldn't believe that day had arrived. My OB was on vacation till the 28th and I prayed we could hold off a day so she could do my C section -wish granted! On the 28th the doctor decided my blood pressure was still high and babies needed to come out - 34 weeks in!
They prepped me for the C and I got my epidural which didn't work so they had to give me general anesthesia and put me under. Because of the last minute change Amit wasn't able to join me in the surgery room and had to hand over the camera to the nurse and wait outside. The babies were born and rolled out to the NICU and Amit got a glimpse of them as they headed there to be examined.
What I am about to share next was a surprise and something that wasn't caught in our Sono. This has been hard for us to talk about hence the "writing can be therapeutic" comment earlier. At some point in my pregnancy the girls were affected by something called the "Amniotic Band Syndrome".
Amniotic band syndrome is rare, and the cause is not known.
No two cases of this syndrome are exactly alike. In the mildest cases, amniotic band syndrome causes a single, shallow crease on one limb. The crease can be seen, but it doesn’t cause problems with the way the limb works. Some children have multiple, deeper bands.
Bands that compress blood vessels may reduce blood flow to parts of your baby’s body. This may limit growth or injure tissue as the baby develops. Bands can be so tight that the tissue past them cannot survive because it doesn’t get enough blood. These bands may cut off fingers, toes or other parts of the arms or legs before a baby is born (congenital amputation or intrauterine amputation). If bands injure but do not amputate your baby’s fingers or toes, the syndactyly (acrosyndactyly). Sometimes the digits are fused only at the tips. may heal together in the womb and cause a type of
In short both the girls were affected by an extreme case of ABS and lost an arm each. Aariya is missing her left arm below her elbow and Aashna her right just above the elbow. As a mother you want your kids to be healthy and perfect and needless to say this was shocking news to us. Its been a little over a week and I am still dealing and trying to make sense of this news. The girls are healthy in all other ways but my heart breaks everyday a little knowing that they will have to face challenges.
Since the girls were born premature they are still in the NICU which has been a blessing in a way - its given me time to get my self together emotionally. I haven't dealt with it a 100% yet but every day I get stronger and I know Amit I will be their strength and will support them in anyway we possibly can. Our families have been nothing but supportive and now we look forward.
According to the doctors babies are resilient and they will not even know they are missing an arm. They will learn to crawl, walk and live a normal life since they were born that way. Its us that need to deal with it more and make them feel normal so they never feel the void. I don't know how much I will share in the future but I had to put it out there so I don't have to explain "what happened" every time someone sees a picture of them and see the arms. I know technology has advanced a lot and they will have options so now we move forward and are looking forward to having our girls home sometime this week.
Here is a little story my mother in law made up which makes my heart feel a little better.
Dedicated to Aariya and Aashna
There is a story which is true
The divine sent us 2 angels. On their flight to their destination there was a storm.
While flying to us the storm was so strong they held each other tight but the lightening damaged their wings. So one angel's right wing got damaged and one angels left wing got damaged but that did not stop them flying. They reached their destination. They knew that they will be taken care of and everyone around them specially their super mum and super dad will help them fly again.
We are all here to help them through their challenging journey. Am thankful to the divine that they chose us.
I want to thank all the nurses and doctors that helped us this last week - I haven't had that many strangers tell me how beautiful our babies are just the way they are and that we will be great parents. Gives me strength just hearing them say it.
UPDATEI just wanted to update you all on the actual diagnosis. After seeing a specialist we were told that the girls werent impacted by ABS but symbrachydactyly. Doesn't change the outcome but we are happy to know there was no amputation and the condition impacted their growth early on in my pregnancy (6-8 weeks in).