Hello everyone, my name is Lucy, I am Brooklyn’s mommy.
When I found out I was pregnant with my little Bee, I was overjoyed, but as my pregnancy progressed, things started to get a little scary for me. During my 6 month ultrasound, the tech started acting very suspiciously, and said “I will get the doctor to come in and speak with you” and practically ran out of the room crying. I was terrified, and after the doctor came in to speak with me, was not any less worried. They had found fluid build up in Brooklyn’s kidneys, and that she had a clubfoot. This being my first pregnancy, I rushed home and did hours of research, only to be reassured that at least her foot was something that could be corrected.
So as I got closer to my due date, and her kidneys cleared up, I thought that her little “funny foot” was not the end of the world, but hoped it was the end of our worries… little did I know!!! I first went in to labor 2 weeks early, to which the doctor reassured me was normal for a first pregnancy. I was in and out of the hospital for those two weeks, until the day came. I was planning on a natural labor, and progressed quite well, but my little Bee had her own plans. I ended up in an emergency C-section, and when Brooklyn was born, she was purple, due to her cord being wrapped around her. The nurses noticed besides her (what I thought was adorable) foot, her chin was recessed, and her cry was “abnormal”.
While I was in recovery, Brooklyn was taken to the critical care nursery, to be more closely observed. Several hours later, I was wheeled up to the nursery to see her and hold her for the first time. I was greeted by her nurse, who was very good about explaining what they were looking at and trying to find answers for. Unfortunately the next three days were quite a whirlwind. Brooklyn ended up in the NICU, with a feeding tube, inability to latch, suck, blink, or completely close her eyelids. The specialist who came to look at her foot also noticed she had some weakness in her wrists, needing splints. After several days of testing, and my incessant questioning, I was told that Brooklyn had a very rare diagnosis of Moebius Syndrome. The genetics tests showed no abnormalities, and the doctor actually stated that it was a statistical 1 in 15 MILLION “chance” that she had Moebius Syndrome.
Thankfully after having a double surgery for a fundoplication, and insertion of a mickey button, Brooklyn healed quickly, and was able to come home in time to spend her first Christmas Eve, and Christmas day with her family. The next 5 months were filled with many specialist appointments, learning about all the branches of the effects of having such a rare diagnosis, and another surgery for her little foot… but through all the trauma, they were also full of amazing cuddles, hearing Brooklyn’s laugh for the first time, watching her sign mama at just 3 months old, and seeing how amazing she was at getting the smile she couldn’t show on her face to appear on the faces of others.
In June 2008, I brought Brooklyn to see her doctor because I noticed when I would hold her sometimes, her feet would get cold and I was concerned about her circulation. During the visit, her doctor amazingly actually listened to my concerns, and was carefully checking things out. After about a full five minutes of listening to her heart, the doctor suggested we go to the hospital immediately and get her heart checked. After the EKG, the results were abnormal, but inconclusive. We were scheduled for an ECHO the next Monday, but again my little Bee had a plan all her own.
Saturday June 14, 2008, my little Bee traded in her body for a beautiful set of angel wings. I startled awake that morning to find her unresponsive and blue in her crib.
I performed CPR on her for the 4 minutes it took the EMT’s to respond, and just before they got there, her eyes opened, and I had a glimmer of hope that she was coming around. When we got to the hospital the Social Services rep was already waiting to take us to “the room” and talk to us… Needless to say I didn’t stay in the room, I had to be out in the hallway to hear whatever I could. They had her in a room with just a curtain between us and it took every ounce of restraint for me not to tear through that curtain. I had no idea what I was going to do, but I just wanted to do something!!! The nurses who were going in and out of the room, couldn’t even look me in the eye, they’d come out with their heads down, and go by me without any acknowledgement. The doctor FINALLY came out, and (his words still echo in my mind) said “we have been here for an hour working, nothing is changing, I need to know what you want us to do” “ any further efforts will not bring your baby back, after being gone for this long, IF we can get her back, she will never be the same”… so unfortunately, I had to make the toughest decision of my life, to allow them to stop torturing her beautiful little body. I had about an hour to hold my baby for the last time, and then all I was left with that day was a tiny curl of her hair, hand and foot prints, and a card signed by everyone who worked on her that day in a little box.
Turns out, when her eyes had opened while I was performing CPR, was the moment of her passing. There is nothing to describe the immense honor I now feel that in her last moments, I was there with her. She knew I was doing all I could, and as a heartbroken mommy, this brought some comfort. I’ve been sharing so much about my little Bee’s story for the last four years, with friends, family, and people who are scared to talk about her. However, have struggled with writing a bio on the Many faces of Moebius Syndrome page, because I was honestly afraid I wouldn’t do her story justice. My daughter was/ is such an amazing gift, words hardly seemed enough. Thank you all for this opportunity to share my daughter’s story, and for being such a great support system for all in this special community. I am so grateful for everyone’s encouragement, and all the beautiful faces here! <3
BKC LIVED 198 DAYS, LOVED FOREVER!