Kara Masi

Mom to Filomena Lucille Masi

Stillborn on March 10th, 2011 at 24 weeks and 3 days

Newark, Delaware

Ever since I was little, I knew I’d always have a house full of children. 

That came true when I married Rich. I have 2 daughters from a previous marriage and he has 2 sons and a daughter. All the children are close in age and they hit it off immediately. We like to joke with people and tell them that the kids get along better than we do!

In January 2010, we decided it was time to add an “ours” to the mix. Since Rich had a vasectomy prior to meeting me, we knew that there was a “what if” since the reversal isn’t always guaranteed to work. We went ahead and scheduled the surgery and on April 28th 2010, my husband’s fertility was restored. Even better, on October 18th, 2010, just under 6  months since his reversal (and 2 days before my 29th birthday) our prayers were answered; we found out we were expecting our first child together!

 We wanted to wait until we were out of the first trimester to tell our family and friends, but we couldn’t wait! We told everybody about 10 days later and all 5 children were excited. Of course, the boys wanted a brother and the girls wanted a sister…..but we just wanted a healthy baby. Rich and I had our first ultrasound around 8 weeks gestation. On the screen we saw our little miracle- a tiny baby that was moving its arms around and had a very healthy heartbeat. We both had tears of joy and were just in so much awe of God’s grace and love. Sadly, that would be the last time we walked away from an ultrasound excited. 

On December 17th, the end of our 12th week, we had our NT scan (or first trimester screening). I had declined to see a genetic counselor prior to the ultrasound because I had already had 2 “normal” pregnancies/children and he had 3. So we decided we didn’t need to discuss our genetic background. Rich and my mother came to the ultrasound. As the tech was taking measurements, my mom and I just smiled and were excited at the tiny baby growing inside of me. Strong heartbeat, lots of movement…..I was so caught up and happy that I didn’t notice the tech taking a LOT of measurements behind the neck. She left and a moment later the doctor came in with the words that I’ll never forget; “We found a problem”.

At the NT scan it was determined that our little baby had cystic hygroma that was 7.1mm in size. We were told that we could terminate the pregnancy since it was most likely a chromosomal defect that was causing the cystic hygroma and this specific issue is likely to end in “fetal demise” (2 other words that I’ll never forget). Our other option was to continue the pregnancy and have further genetic testing done to determine if there were any chromosomal issues. We were quickly taken into the genetic counselors office to talk about the different chromosomal/genetic issues that could be causing this and to ask any questions that we many have. I remember thinking the entire time, “They’re wrong. This is a mistake. There is nothing wrong with my baby and I’m going to prove this to them”.

Our genetic counselor was very sweet and compassionate. She told us that there was a 60% chance it was Turner Syndrome, Down Syndrome or Trisomy 18 but we wouldn’t know unless we did a CVS or an amniocentesis. Since I was approaching 13wks, we decided we’d ride it out to 16 weeks and have an amniocentesis. Since one of the specialists at the hospital was conducting a study, we were able to be given information on having our own genetic makeup tested to see if we were carries of anything. We set the date for the amnio and I left the hospital an absolute wreck. Since Christmas was about a week away, I decided to go to the mall and do some damage…

On January 14th 2011 my husband and I arrived at Maternal Fetal Medicine to have our amnio performed. We had “googled” cystic hygroma and were able to find a few success stories. We were certain we’d be one of them. As they put the probe on my round belly, I held my breath for a second…. And then I started to cry. Our baby had a strong heartbeat but the cystic hygroma was enormous and spetated. I like to compare it to a blown up trash bag at the back of the neck. Edema had began to develop under the skin, there was a mass of fluid that was surrounding the heart/lung area and the ultrasound tech informed us that the amniotic fluid level was extremely low. The tech left the room and Rich and I began sobbing as we waited for the doctor. As the doctor entered, she stated, “bad news, everything looks worse. We cannot find the bladder or the kidneys and hydrops have begun to develop”. I cried….no, I sobbed. I felt like everything was being torn away from me. As I lied there, sobbing, covered in cold ultrasound goo, I was again offered the option of terminating my pregnancy. I repeated that I was not going to terminate and I was again told about the outlook of having a healthy baby- not good. Still, I had hope but wondered how on earth could God allow this to happen to us? I could feel movement and small kicks and there was such a strong heartbeat. Why me? Why US? We determined that the fluid level may be low due to the gestational age so we decided to not do the amnio and come back in 2 weeks in hopes of improvement. I recall leaving feeling so hopeless as the specialist informed us that we most likely wouldn’t be pregnant much longer.

When we arrived for our second amnio attempt, I was hopeful. I didn’t know what to expect but I DID know that our little baby was still going strong as all the kicks were becoming stronger and stronger. As they placed the probe on my belly, we noticed that the hygroma was a bit larger and the edema was spread throughout the entire body and the hydrops were severe. We were able to locate both kidneys and the bladder, though we weren’t sure how functional they were. Since there was more amniotic fluid, we felt confident and went through with the amnio. The process wasn’t too bad and our little baby stayed completely out of the way. We then had to endure 4 excruciating days to wait for the preliminary results.

On February 1st, 2011, I received a phone call from our genetic counselor with the amnio results. We learned we were having a baby girl and she had 45 chromosomes- Turner Syndrome was the official cause given for the many issues our little girl was having. Part of me was elated that it wasn’t Trisomy 18 since it was a “not compatible with life” defect. I had done a lot of research on Turner Syndrome and I felt confident that we’d be okay. We decided we’d name our little girl Filomena Lucille (after both of Rich’s grandmothers….his grandmother, Filomena, is almost 97 and going strong!). Filomena means “lover of strength” and we knew that it was because of her strength (and God) that she was still with us.

At 19 weeks we went in for our anatomy scan. Since the hygroma was now about 3” wide, she was flipped facing my spine and breech. We couldn’t see her face and due to the edema she was very swollen on the ultrasound. The specialist again offered termination which we again declined. Filomena’s heart was shifted due to the hydrops and I made the decision that night to contact the Children’s Hospital of Philadelphia to see if they could help us. It was another bad ultrasound, another reminder from the doctor that our precious baby isn’t going to survive and another reminder of how bad I wanted this baby.

On February 16th, 2011, Rich and I drove to CHOP and started our morning off with a 3hr ultrasound. Filomena’s position was still breech and facing my spine, which isn’t optimal for ultrasounds. After the first ultrasound, I went in for the ultrasound that I knew was going to make or break my pregnancy- the echocardiogram. As I made my way from one room to the other, I thought about everything I had read on CHOP’s website. I read about all the different things they can do while the baby is still in utero and I was SURE they could save Filomena. I was positive these were the people who were going to give me my bundle of joy. I just knew they were going to be the first people to say, “we see this all the time and we can help you”.

As we sat down with world renowned neonatal cardiologists and other world renowned fetal/neonatal specialists, I couldn’t help but notice the uncomfortable silence in the room. No smiles, no glimpse of hope in their face….. Nothing but the sorrow we had seen by other specialists. After they all quietly introduced themselves, one by one they very solemnly and compassionately said, “we’re so sorry but there is nothing we can do for your daughter”. We were told that due to the extent of the hydrops, Filomena developed hypoplastic left heart syndrome (HLHS), which is a major congenital heart defect that has a poor outcome. We were also told that it was highly likely we wouldn’t make it to the 3rd trimester. Although they weren’t giving me the news I wanted to hear, the level of pain I saw in their faces made me realize that they wanted to save this baby just like I did…..but like me, they couldn’t. they left the room and Rich and I sobbed. He held my and held my belly and wept like a child. From that moment on, my prayer changed from “God please take her from me if you aren’t going to heal her”. I couldn’t handle the downs without the ups.

We went to Build-A-Bear that weekend with 5 children and made Filomena a bunny. We put in 1 heart, from each of us, and wrote a special message on it. We recorded our voices saying, “I love you Mena” (her nickname) and picked out a cute outfit. I went to Babies R Us and bought a beautiful blanket and some preemie outfits. I wanted to make sure that IF she came early she would have things of her own. 

I wanted so badly to introduce her to her big brothers and sisters. I wanted to watch my husband adore his daughter and wanted to prove to the world that God is real and here is proof.

But I never got to do that.

On March 8th, 2011, I felt Filomena kick me for the last time. A few hours later, I knew in my heart she was gone. I was in so much denial I made Rich take me to Babies R Us to buy a car seat/stroller and a not so cheap breast pump. I was scrambling to convince myself that she wasn’t gone. I was trying to stay positive and not upset Rich. That night, Rich sang the hymn to her that would always make her “dance”….but she didn’t move. I drank soda, juice and ate some sour patch kids….no movement. We went to sleep that night knowing but not admitting our little princess was gone.

On March 9th, 2011 we went to labor and delivery to confirm what we knew and yes, it was official: at 24 weeks and 2 days, our little girl had left us behind to be with Jesus. As the ultrasound probe hit my belly one last time I held my breath just as I always had….but this time a lot more tears were involved. We returned that evening to start labor induction and on March 10th, 2011 at 1:06pm our baby girl’s body entered the world. She was absolutely beautiful. She was 2lbs 11oz and 12” long. She had the cutest little cleft lip and the most beautiful low-set ears, which is common for Turner Syndrome girls. Her handprint was identical to mine and her scent was heavenly. After we dressed her in her clothes and wrapped her up in her blanket, I rocked her. I kissed her. I told her how much we loved her and waited for her. She was beautiful and not a fetus; she was a baby…OUR baby and we just adored her. Our pastor came to baptize her and at 9:00pm, we decided it was time to hand her to the nurses so they could give her to the funeral home. The nurse was crying as she was preparing Filomena to leave the maternity floor. There was so many tears that day….it’s no wonder we got a whopping 2.5” of rain that day!

Our children are sad but like many kids; they fell, got hurt, cried, got back up and kept moving. They speak about their baby sister and tell people (usually pregnant women) about the loss but they always make sure they mention that she’s in heaven protecting all the unborn babies and playing with the ones that have left us too soon.

I have found comfort in talking about Filomena and the more I talk about her, the more love I feel from her in heaven. Rich and I do want more children and we find so much comfort in knowing Filomena will help God handpick her little brother or sister. We also know that our love for her will outlive our life as well as the lives of all our other children and their children.

Kara blogs at www.missingfilomena.blogspot.com.

She can be contacted at youngermasi@yahoo.com.

 

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Comments

  1. Kara, I just read your story and I have no words to comfort you at this moment…I thought I had it bad, but what you are describing here is really worst than my case although not less painful!! The only thing I could tell you is that she is with Jesus, with God and she is your angel taking care of you from heaven, like I have my two angels up there too…and that is what it keeps me going…besides my beautiful 24 years old miracle, my son Ben!. Keep the faith, life is awesome and you have 5 reasons to be happy…it will take time, but you will laugh again…And you are not alone…

  2. Maria says:

    Thank you so much for sharing your beautiful daughter with us. I have no words to express how sorry I am for your loss. Please just know that you and your whole family are in my prayers tonight and always.

  3. Franki says:

    Thank you for sharing Philomina Lucille with us. Her little life had an impact, was and is meaningful!

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