Updated: Jul 14, 2020
Hello! Let me introduce myself; my full name is Alison Ferrara, but everyone calls me Ali. I wanted to make a formal introduction to share my story with you all, as I recently took on a more active role in volunteering with Three Little Birds. When authoring social media posts for TLB, I think it is important for you to know who is behind the words you are reading. I thought my first official article should share my story and tell readers how I ended up becoming a part of this amazing organization. An incredibly long story if I allow it to be, I’ll give you the semi-short version with just enough details to highlight the important parts!
To begin, I feel one of the very biggest parts of who I am is a Mom, as that is such as important role and a role I'll have for all my life! However, it just so happens I have no children in my arms. My only child waits for me in Heaven. While I am a loss Mom and a bereaved Mother, that is not all I am! I am a social worker, passionate about social justice and the dignity and worth of all people. My full-time job is a Behavioral Health Therapist for children/adolescents and I love my job. I am also a wife, completely in love with my husband, though he often drives me nuts. I am an Adjunct Professor of Social Work; my weekends are often filled with grading my online students’ work. My favorite class to teach is Ethics of Helping Professions. I am dedicated to my Christian faith and a strong believer, though I am more than happy to respect any beliefs different than my own. I have the best brother in the entire world who has taught me how much love and support you can communicate to a person without ever having to speak a word. I am a daughter, a sister, an aunt, a niece, a granddaughter, and so much more. Those are some of my favorite parts of who I am. There a lots of parts of me I don’t like so much, and maybe if I ever get a chance to sit down with you and talk, I can share some of those darker, deeply flawed pieces too.
As I said earlier, I am a mother first and foremost, and that is mostly what I want to share with you.
May 18th, 2017. This was one of the happiest days of my life. After nine long months of negative pregnancy tests, I finally saw two lines. Two clear beautiful lines on a pregnancy test. My husband and I were in pure bliss, yet so naïve. We thought a healthy baby was practically guaranteed to be in our arms in 9 months.
From the beginning of my pregnancy, we experienced many ups and downs, cruel twists of fate and a confusing roller coaster of emotions. June 1st, after two weeks of sheer joy, I went to the bathroom at work and saw blood. My heart stopped; my blood ran cold. After an ultrasound, our OB called and told me what a blighted ovum was (baby did not develop beyond a few cells, leaving an empty gestational sac) and that had happened here. I had blood work done to confirm what she was already knew.
I cried and the only words from a cold nurse were, “Just try again next month.” After a few days of blood work, my HCG levels were rising. Not quite as much as they were supposed to, but they were going up! The doctor still gave us a less than 20% change of the baby being viable, explaining it was much more likely that my body just was not aware that the baby had passed yet. My husband (Joe) and I rallied our praying friends. A few more blood tests led to a follow up ultrasound where we heard words I will never forget. As I asked the tech, “Are you sure you can’t tell us anything?” She turned the monitor to us and said, “I can tell you I see a heartbeat.” We laughed and stared in awe at our baby. I literally fell to my knees and thanked God in the changing room. One week later another ultrasound showed a strong heartbeat and no concerns. The doctor ruled the pregnancy viable and healthy.
We celebrated a miracle! Since so many people had known about the pregnancy when we had asked for prayer, we officially announced our baby to the world at 8 weeks, a little earlier than we planned. We were safe now, right?
We got to feel that precious joy for 4 more weeks. We were so sure the scare had been enough and nothing else could go wrong. Then, at the 12-week ultrasound, the tech had me wait to talk to the doctor before leaving. The doctor explained that I needed to see a Maternal Fetal Medicine (MFM) specialist immediately. He said that they were already closed today, but he got me an appointment first thing the next day. He gave very few details.
I remember every single detail of that appointment, and the next 24 hours. From having to call my husband to tell him, to reading the findings on my patient portal. I remember going back to work because I didn’t know what else to do, until the appointment and its aftermath the next day. I won’t bore you with the nit-picky details, but the important part is that MFM explained that our baby had severe hydrocephalus (fluid on the brain). That doctor pushed very hard for us to have an abortion immediately. When I protested, he told my husband and mother (who had accompanied us for support) that I could die if I carried this baby to term. He did not know exactly the prognosis for the baby, but he knew she would be disabled. He ended up scheduling a two week follow up for me to return and see if things had changed at all. He ended by saying those 2 weeks would give me time to accept the diagnosis and schedule a termination.
I would like to say at this point in my story, if you have terminated your pregnancy for medical reasons or feel you would in this circumstance, there will never be judgement from me or anyone at Three Little Birds. That is your choice. No one can know what is best for your baby, or for you, better than you and your partner. However, termination was not what I or my spouse wanted, so we fought for our baby to live. This was the choice that was right for us, I would strongly encourage any parent in our position to be aware of all their options and the consequences (good and bad) of each option before making a choice.
The next two weeks were spent full of research. I researched everything I could about hydrocephalus and all the treatment options. In the vast majority of cases, treatment was available, and babies could have a great quality of life. No research showed any risk to the mother. I called CHOP (Children’s Hospital of Philadelphia) the next day and told them my story. A nurse reviewed my information and told me she could not understand how my life could be in danger, encouraging me to advocate for myself. CHOP could see me later in my pregnancy through their Fetal Diagnosis program, but said I should keep my appointments with my current doctor for now since it was too early for their tests. She encouraged me to not have false hope, but also explained that very little could be known this early based on the results I showed her.
At my next appointment, additional issues were found with our baby. Through the miracle of a well-timed flu, our original MFM physician was not available and we ended up seeing a wonderful doctor, who explained that our case was essentially “over their heads”. He could not tell us if our child could live, or what their quality of life would be. There was no danger to me at this time so he recommended CHOP and was thrilled I had already referred myself. CHOP would see us at 18 weeks, the earliest time for a fetal MRI. While waiting for 18 weeks to come, we had lots of genetic tests and blood work, which all came back perfectly normal. They also told us we were having a girl!
We named our sweet girl, Miriam Jordan Ferrara, and called her Mira for short. The next five weeks were filled with waiting, tests and time spent loving and bonding with our daughter in so many ways. On August 28th, our evaluation day at CHOP arrived. After hours full of tests and consults, the Director of OB with CHOP’s Fetal Diagnosis team sat down and gave us a long list of many, many new anomalies found in Mira's tiny body. Not only did her heart have a hole (VSD), but her kidneys were fused, in the wrong place, and polycystic. Her feet were clubbed. Her spine had not closed properly in at least one area in her neck. The list went on and on. Many were small problems, but many were big. The hydrocephalus was the worst of it, as it was an extremely rare and severe case. Her stomach did not fill and empty into her bladder at all during our 3-hour ultrasound. This meant she was not swallowing, which in turn meant her brain stem was impacted by the hydrocephalus. The culmination of these things meant she could not breathe, eat, or fully move on her own. My body was currently doing all of these things for her, but Mira could not live after birth.
We elected to carry Mira to term with the great help and support of CHOP’s Prenatal Palliative Care team. I was monitored very closely through my pregnancy, as Mira’s head became extremely large due to the fluid buildup and me having no amniotic fluid. A c-section would be needed, as it was impossible to attempt vaginal delivery. The doctors wanted to time the c-section right, to give us the best chance of meeting Mira alive and saving my uterus.
They succeed! After many weeks of loving and bonding with our daughter in the womb, she was born on December 18th, 2017 at 34 weeks, breathing ever so quietly. We held her for 53 minutes until she took her last breath and left this Earth.
My recovery time in the hospital was filled with making memories and loving her Earthly body. (I will talk more about this decision and how we made memories in future posts.) After three days of showering her with love, we surrendered her body to CHOP and walked out of the hospital, only clutching a box of memories. It has been almost 2 and half years since that day. These years have been filled with unimaginable pain and longing. However, they have also been filled with love and healing. It is all mixed together and always will be. That will never change.
Three Little Birds was an essential support for Joe, Mira, and I, both during my pregnancy and at the hospital. Desiree Miller took my maternity pictures and even convinced me to do a belly cast. She took hundreds of beautiful pictures of Mira on her birthday, which are now my most treasured possessions. Three Little Birds has continued to be a great support and resource as Joe and I experience the never ending grief of infant loss. They are present as we navigate the world of secondary infertility (infertility after having a pregnancy), as our dream to have a living child has yet to come to fruition.
A few months after Mira died, I reached out to Desiree and Kirsten and asked to help them in some way. Remembering back to my maternity session, I made a banner with Mira’s name, as well as a quote card, that we used in my maternity pictures. They were now beautiful keepsakes. And because naming Mira was so particularly important to me, and to other loss moms as well, I wanted more families to have these items. With their support, I started “Mira’s Banners of Love” and began making them for any Carrying-To-Term family that reached out to Three Little Birds for support.
Recently, I began helping in a new way by assisting with managing their Facebook page, as well as authoring articles for their blog and social media. My hope in writing is to help loss parents feel less alone and give them good fact-based resources/advice. My aim in sharing is also to help those that have not experienced the loss of a baby, understand "us" a little better.
Through my future posts, I am sure more of my story will be told. There are so many details and I could literally write hundreds of pages. It is hard to hold myself back from writing more and more, knowing how the right detail could help someone else, but too much at once helps no one. I thank you for learning about me and remind you, if you need support, we are here. If you would like more details of Mira’s journey, you are welcome to read the blog I started while carrying-to-term at babyferraram.blogspot.com
Author: Ali Ferrara