Sofia Giovanna
Another angel is on the way
We were thrilled when we found out we were going to have a baby… I was 4 weeks pregnant.. We were even more thrilled when we found out we were going to have a little baby girl… I was 20 weeks pregnant. Somewhere between this time period, fear entered our hearts and confusion entered our minds.
We found out at 9 weeks pregnant that there was a 1/11 chance of our baby having Down syndrome. I was scared and devastated. We had planned on having just one child and this was not the child we had planned. We tried to put the possibility out of our minds, but I was 38 years old and I knew the statistics that came along with being a pregnant woman of “advanced maternal age,” as all my paperwork so clearly pointed out. We decided not to have further testing because it did not matter what the results would be. I had waited my entire life to have a daughter and I was going to enjoy the pregnancy and love my daughter no matter what. So we decided to just enjoy watching her grow through the sonograms and look for the typical markers for Down syndrome.
We were thrilled when we found out we were going to have a baby… I was 4 weeks pregnant.. We were even more thrilled when we found out we were going to have a little baby girl… I was 20 weeks pregnant. Somewhere between this time period, fear entered our hearts and confusion entered our minds.
We found out at 9 weeks pregnant that there was a 1/11 chance of our baby having Down syndrome. I was scared and devastated. We had planned on having just one child and this was not the child we had planned. We tried to put the possibility out of our minds, but I was 38 years old and I knew the statistics that came along with being a pregnant woman of “advanced maternal age,” as all my paperwork so clearly pointed out. We decided not to have further testing because it did not matter what the results would be. I had waited my entire life to have a daughter and I was going to enjoy the pregnancy and love my daughter no matter what. So we decided to just enjoy watching her grow through the sonograms and look for the typical markers for Down syndrome.
It was the week before Christmas and we were excited to find out the sex of our baby, the day had finally come for the sonogram. After telling us that it was a girl, there was an eerie silence as the technician continued scanning the sonogram. Our moment of excitement suddenly turned into fear, and everything from this point forward seemed to become a blur. In a very thick accent she mumbled something about the heart and a hole. We could not understand what she was saying, and before we had time to process her words, she left the room to get the neonatologist. As we waited for the specialist, time stood still and I could feel the fear and tears building from deep within my soul. The doctor took a close look at the sonogram and told us that our daughter had a huge hole in her heart. She said this type of defect was very common for babies with Down syndrome and combined with a few other things she saw on the sonogram, she said our baby most likely had Down syndrome.
This was all too much information to process at once. We feared for the life of our unborn child and wanted to do everything we possibly could to help her and improve her chances during the pregnancy and delivery. In our moment of panic, fear, and ignorance, we agreed to have an amniocentesis right there on the spot. We thought if this could help the doctors be prepared for any complications along the way and during delivery, we should go ahead and find out for sure. By the time we got the call a few days later confirming that our daughter did indeed have that extra 21st chromosome, it didn’t even matter. All we were concerned about was her heart. We didn’t know what any of this meant. All we knew was that our little girl had a big problem.
We were immediately sent to our obstetrician who was full of condolences. We also met with a genetic counselor that offered us a simple genetic definition and diagrams of that extra chromosome. She also told us that we can expect our child to have a wide variety of developmental delays of unknown levels. What our obstetrician offered us was her cell phone number so we could call her over the weekend with our “decision," as she assumed we would terminate the pregnancy because all of her previous patients had. We were 20 weeks pregnant and had a very small window of time should we also choose that route.
What we were not offered was what it meant to have a child with Down syndrome. We were not offered any real counseling or information on children with Down syndrome. We were not offered contact information to families or support groups who could share their experience and firsthand knowledge of what it means to have a child with Down syndrome. This is what we needed most, not pressure to abort our beautiful baby, and not just a clinical genetic definition. We felt completely isolated and alone.
One week later, the day before Christmas, we took our first step toward becoming members of a wonderful new community of support and inspiration. We discovered the Down Syndrome Connection web site and contacted Kathy Getman. One month later, and six months pregnant, we attended our first DSC gathering at Peter Piper Pizza. We met some beautiful children and wonderful families. Many parents had heard about us and were excited to share the stories of their babies and their heart defects. Almost immediately these moms pulled up their children’s shirts and so proudly showed us the scars from their heart surgeries. I wouldn’t understand this show of pride until months later after our own baby had her surgery scar... its like a badge of honor, warn very proudly, showing that they made it through the dark times and were able to stand strong on the other side.
The Down Syndrome Connection made a world of difference in my family’s journey with Sofia, especially in the beginning when we were entering new and unknown territory and didn’t even have our beautiful baby in our arms yet! They were a voice of acceptance and assurance in a time of confusion and fear. They were warm and welcoming and were the first ones to say “Congratulations on your little baby girl” and really mean it. They were open arms giving us a big loving hug full of joy and celebration.
Sofia’s Journey of Courage
Our daughter’s journey of courage began with her very first echocardiogram when I was 20 weeks pregnant. We had just found out that her tiny heart had a huge hole and was missing a valve. We were terrified. She was born two weeks early on April 15, 2007 weighing only 5 pounds 6 ounces. The cardiologist said her heart looked very strong though and there was no need to worry about the possibility of heart failure for at least three or four months. We remained in the NICU, however, until she was able to suck and eat on her own. Two weeks later, we were finally able to take her home and help her get strong enough for her scheduled surgery at five months of age.
This was all too much information to process at once. We feared for the life of our unborn child and wanted to do everything we possibly could to help her and improve her chances during the pregnancy and delivery. In our moment of panic, fear, and ignorance, we agreed to have an amniocentesis right there on the spot. We thought if this could help the doctors be prepared for any complications along the way and during delivery, we should go ahead and find out for sure. By the time we got the call a few days later confirming that our daughter did indeed have that extra 21st chromosome, it didn’t even matter. All we were concerned about was her heart. We didn’t know what any of this meant. All we knew was that our little girl had a big problem.
We were immediately sent to our obstetrician who was full of condolences. We also met with a genetic counselor that offered us a simple genetic definition and diagrams of that extra chromosome. She also told us that we can expect our child to have a wide variety of developmental delays of unknown levels. What our obstetrician offered us was her cell phone number so we could call her over the weekend with our “decision," as she assumed we would terminate the pregnancy because all of her previous patients had. We were 20 weeks pregnant and had a very small window of time should we also choose that route.
What we were not offered was what it meant to have a child with Down syndrome. We were not offered any real counseling or information on children with Down syndrome. We were not offered contact information to families or support groups who could share their experience and firsthand knowledge of what it means to have a child with Down syndrome. This is what we needed most, not pressure to abort our beautiful baby, and not just a clinical genetic definition. We felt completely isolated and alone.
One week later, the day before Christmas, we took our first step toward becoming members of a wonderful new community of support and inspiration. We discovered the Down Syndrome Connection web site and contacted Kathy Getman. One month later, and six months pregnant, we attended our first DSC gathering at Peter Piper Pizza. We met some beautiful children and wonderful families. Many parents had heard about us and were excited to share the stories of their babies and their heart defects. Almost immediately these moms pulled up their children’s shirts and so proudly showed us the scars from their heart surgeries. I wouldn’t understand this show of pride until months later after our own baby had her surgery scar... its like a badge of honor, warn very proudly, showing that they made it through the dark times and were able to stand strong on the other side.
The Down Syndrome Connection made a world of difference in my family’s journey with Sofia, especially in the beginning when we were entering new and unknown territory and didn’t even have our beautiful baby in our arms yet! They were a voice of acceptance and assurance in a time of confusion and fear. They were warm and welcoming and were the first ones to say “Congratulations on your little baby girl” and really mean it. They were open arms giving us a big loving hug full of joy and celebration.
Sofia’s Journey of Courage
Our daughter’s journey of courage began with her very first echocardiogram when I was 20 weeks pregnant. We had just found out that her tiny heart had a huge hole and was missing a valve. We were terrified. She was born two weeks early on April 15, 2007 weighing only 5 pounds 6 ounces. The cardiologist said her heart looked very strong though and there was no need to worry about the possibility of heart failure for at least three or four months. We remained in the NICU, however, until she was able to suck and eat on her own. Two weeks later, we were finally able to take her home and help her get strong enough for her scheduled surgery at five months of age.
Just two days after we got her home, she went into heart failure. We returned to the hospital for another three weeks and watched as she lost weight while the doctors tried to stabilize her tiny heart and deal with various complications brought on by heart failure.
Because her heart required all of her energy to keep it pumping, she didn’t even have the strength to eat, so when she was just four weeks old and weighed less than six pounds, she was operated on and had a feeding tube put directly into her stomach through her belly. Once they found the right combination of heart medications to ensure her heart was stable, and she could tolerate food being directly pumped into her stomach through the g-tube, we were finally able to take our sweet baby home again. By now she was almost six weeks old, but had spent only two days of her life at home.
The following four months we struggled to keep her healthy and help her gain the weight and strength she desperately needed to endure her open-heart surgery. Those months were filled with weekly doctor appointments, blood tests, echocardiograms, sleepless nights, and many tears. Unfortunately, she stopped gaining weight when she reached nine pounds. The doctors had wanted her to weigh thirteen pounds before they operated, but she was five months old and could not wait any longer. She was four pounds short of her goal when the date of surgery arrived in September.
Because her heart required all of her energy to keep it pumping, she didn’t even have the strength to eat, so when she was just four weeks old and weighed less than six pounds, she was operated on and had a feeding tube put directly into her stomach through her belly. Once they found the right combination of heart medications to ensure her heart was stable, and she could tolerate food being directly pumped into her stomach through the g-tube, we were finally able to take our sweet baby home again. By now she was almost six weeks old, but had spent only two days of her life at home.
The following four months we struggled to keep her healthy and help her gain the weight and strength she desperately needed to endure her open-heart surgery. Those months were filled with weekly doctor appointments, blood tests, echocardiograms, sleepless nights, and many tears. Unfortunately, she stopped gaining weight when she reached nine pounds. The doctors had wanted her to weigh thirteen pounds before they operated, but she was five months old and could not wait any longer. She was four pounds short of her goal when the date of surgery arrived in September.
We thought we were prepared for her surgery with all the research we had done and by talking with other parents who had already reached the other side of what we were just beginning to embark upon, but nothing can really prepare you for seeing your tiny baby lay in the pediatric intensive care unit after major open-heart surgery. She was recovering quite well after surgery and came off the ventilator that very same day, in fact, the doctors said she was recovering faster and better than most babies, but everything changed very quickly. Sofia went into heart failure just two days before we were supposed to take her home. Our daughter’s heart had torn apart, the stitches did not hold. As her heart split open again, so did mine. I was terrified that neither one of us would recover.
Sofia, our amazing daughter however, gathered the strength to pull through. This tiny baby had been cut open twice, was bruised and battered, a machine was breathing for her and pacing her heart, she had more tubes and wires and IVs in her than you would think such a small baby could endure, but she eventually healed. It seemed she was the strongest of us all. She was the one who carried us through those dark days and eventually into the light again. It was her joyful smile, just a few days after her second surgery, that let the sun shine into our lives again.
Sofia, our amazing daughter however, gathered the strength to pull through. This tiny baby had been cut open twice, was bruised and battered, a machine was breathing for her and pacing her heart, she had more tubes and wires and IVs in her than you would think such a small baby could endure, but she eventually healed. It seemed she was the strongest of us all. She was the one who carried us through those dark days and eventually into the light again. It was her joyful smile, just a few days after her second surgery, that let the sun shine into our lives again.
During the month we spent at Phoenix Childrens Hospital, a program was started for children called Beads of Courage. It allows children to tell their medical story using colorful beads as symbols of courage, each bead representing a specific treatment. For example, each black bead that you see on Sofia’s necklace represents a blood draw or IV (she has more than 100 of these beads) and the red “heart” bead represents one of her heart surgeries. Other beads represent each x-ray, night spent in hospital, medication, doctor visit, therapy session, times on bypass machine, blood transfusion, central line, etc. (At 14 months of age, Sofia has now earned almost 500 beads.)
When I saw all of the beads that Sofia had earned, beginning with that very first echocardiogram before she was even born, I saw her journey in a whole new way. For having only been on this earth 5 short months, these beads told the story of an incredibly long journey she had already traveled. When she is older, she will be able to show them with pride and they will allow her to better understand the strength deep within herself and the power of the incredible journey she traveled at such a young age.
Unfortunately, the second operation did not completely repair her heart, but the cardiologists are hopeful that she can wait until she is 10 years old before having to operate again and repair or replace her mitral valve. Even though she still has a major heart defect, Sofia is a completely different baby now than before her surgeries. She is catching up with her development at an amazing rate, she is gaining weight quickly (15 pounds now!), and is slowly learning to eat again. From the outside, she is just another typical baby… talking, smiling and laughing all the time, and bringing joy and love to everyone along the way.
(An update as of November 2008 - We just found out heart has begun to enlarge due to the massive blood flow from the severe leak in her mitral valve. She will be headed for another open-heart surgery sooner than we had hoped. This time they will replace her mitral valve, but she will need at least one more surgery after that one when she outgrows the artificial mitral valve. We are hoping she can wait at least a year before she returns to surgery, but they say she definitely will not make it to age 5 without the surgery. It all depends on the rate her heart continues to enlarge. You certainly would not know it to look at her... she is full of energy, running around and getting into all kinds of toddler trouble.)
(Update September 2009 - Sofia is now 2 1/2 years old and has been receiving good reports at the cardiologist every three months. Her heart has NOT enlarged further since December. It has been almost a year since her heart began to enlarge and we've been blessed with good news since then. We are still hoping for another year before she has to go back to surgery.)
When I saw all of the beads that Sofia had earned, beginning with that very first echocardiogram before she was even born, I saw her journey in a whole new way. For having only been on this earth 5 short months, these beads told the story of an incredibly long journey she had already traveled. When she is older, she will be able to show them with pride and they will allow her to better understand the strength deep within herself and the power of the incredible journey she traveled at such a young age.
Unfortunately, the second operation did not completely repair her heart, but the cardiologists are hopeful that she can wait until she is 10 years old before having to operate again and repair or replace her mitral valve. Even though she still has a major heart defect, Sofia is a completely different baby now than before her surgeries. She is catching up with her development at an amazing rate, she is gaining weight quickly (15 pounds now!), and is slowly learning to eat again. From the outside, she is just another typical baby… talking, smiling and laughing all the time, and bringing joy and love to everyone along the way.
(An update as of November 2008 - We just found out heart has begun to enlarge due to the massive blood flow from the severe leak in her mitral valve. She will be headed for another open-heart surgery sooner than we had hoped. This time they will replace her mitral valve, but she will need at least one more surgery after that one when she outgrows the artificial mitral valve. We are hoping she can wait at least a year before she returns to surgery, but they say she definitely will not make it to age 5 without the surgery. It all depends on the rate her heart continues to enlarge. You certainly would not know it to look at her... she is full of energy, running around and getting into all kinds of toddler trouble.)
(Update September 2009 - Sofia is now 2 1/2 years old and has been receiving good reports at the cardiologist every three months. Her heart has NOT enlarged further since December. It has been almost a year since her heart began to enlarge and we've been blessed with good news since then. We are still hoping for another year before she has to go back to surgery.)
The Buddy Walk… Fill Our Hearts
It was very special to us to be able to attend the Buddy Walk. It was a sort of goal for me to have her healthy enough by the time the Buddy Walk rolled around in October, just one month after her heart surgery. For a long time, I didn’t think we were going to make it with her difficult recovery, but she’s a fighter and got doctor approval to take her out.
I am so proud of our daughter and am so blessed to be part of such an amazing community of support and love. I cannot tell you what a difference this group has meant to us and how they eased our pain and opened our minds and hearts and helped us understand what it really means to have a child with Down syndrome. We came to understand that we are the luckiest parents in the world to have been blessed with such a special child.
A stranger came up to us when we first got there, and with a sparkle in her eye politely asked if she could admire our beautiful daughter. Of course, I said, but asked that she not touch her because she is recovering from 2 major heart surgeries and has a compromised immune system. She was obviously a mother of a child with Down syndrome. She bent over Sofia’s stroller and looked into her eyes. This stranger was beaming with love for our little girl because she knew how special she is. She knew how special all of these children are and how this tiny child would change our lives in ways we cannot yet imagine and teach us so much, even more than she already has. It was if she and Sofia were gazing at each other and sharing this little secret.
She asked what kind of heart defect Sofia had and we explained it was a complete AVSD (AV Canal). She was very familiar with it, obviously she had been there in those hospital rooms and paced those hospital corridors the same way we had. Then, as she stared into Sofia’s eyes, she said something I’ll never forget. Something that went straight to my heart...
“Ya know, these babies are up in heaven and say to God... ‘Fill me up... fill my heart up with unimaginable amounts of love until it makes my tiny heart burst. Don’t worry,’ the babies say. ‘They’ll fix my heart when I get down to earth.’”
-Sofia’s proud parents (Christina & Dennis) (Feb 2008)
Photos by Ellen Duperret - Tucson, Arizona (www.ellenduperretphotography.com)
The following links will take you to articles from three wonderful organizations containing more information on Sofia's journey:
Beads of Courage Mended Little Hearts La Leche League
If you would like to read a touching story about another parent's journey with thier daughter, here is an article written by a friend of mine that was published in Washington Parent magazine, November 2006 (click on the article title below to access it). Adrienne gave birth to her daughter Clare and found out hours later that she had Down syndrome and a heart defect. She was devestated and struggled to come to terms with what it meant for their future to have a child with Down syndrome. To quote from her article... "Almost four years later, I remember just how desperate I felt at the time, and I wish the 'me' I am today could go back in time and tell the 'me' back then just how wrong I was." .... " I believe with all my heart and soul that Clare is exactly as God intended her to be. Given the choice, we wouldn’t change a single thing about Clare. We think she’s perfect. Just perfect." - from Days and Dreams Filled with Promise by Adrienne Vadell Sturges.
Contact us at DownRightBeautiful@hotmail.com