We had the pleasure of meeting a fantastic family while we were in London with Hazel. They were awaiting the arrival of their 2nd child, Carter. Among the many things that define Carter - handsome, determined, happy, loving - he has Down Syndrome. Naturally, he and Hazel had to be friends.
When Carter was in his mommy's belly he defied all odds. He faced Cystic Hygroma, Fetal Hydrops, Atrioventricular Septal Defect, Tetralogy of Fallout and two patches of edema. Yes, it is as scary as it sounds. Yet he is here - healthy, happy, and thriving. This is just the type of kid Carter is. Another tiny hero!!!
Although Carter has been doing well to this point, he is starting to experience some difficulty growing and thriving due to his heart condition. He will be going in for AVSD surgery on Tuesday October 16th. He has a wonderful family to support him. Please keep Carter and his family in your thoughts and prayers over the next little while. They are going to need our help to get through this difficult time.
The support that we have received from all of you carried us through some of our darkest days. We can never fully express our utmost gratitude for your involvement and concern for the well being of our baby girl. It has helped Hazel, Ella and now Carter. Thank you so much everyone for being such an amazing community to be a part of...we are proud!!!
A quote from Carter' s mommy...
"Thank you to all our friends and family and to those people we don’t even know for your kind words, but most of all your prayers. You have made this journey less difficult. You inspire us to be better, to do more to raise awareness for those with Down Syndrome, but most of all remind us to enjoy the little being that Carter is. So I say again, Thank You, thank you from the bottom of our hearts. We are so lucky and so blessed."
(I have attached Carter's full story below. His mother, Alysha, wrote down her experience and wanted to share it with you all...very brave!!!)
Carter and Hazel had their first play date this summer, we hope there will plenty more. Hazel and mommy waiting to meet the little man...
Here they are...perfectly sweet family!!!
And this is the little fighter, Carter...
Kinda hard to hide the love I have for this little angel...
The remainder of this post was written by Alysha, Carter's mommy.
My husband Brandon and I found out we were expecting again in late July 2011. Needless to say we were a little surprised but were excited to give our daughter Dakota a play mate. Our families found out shortly thereafter as it’s hard to keep surprises from them. As us, they were elated.
At 13 weeks I went for my IPS (Integrated Prenatal Screening <1>) blood work and ultra sound. I was so excited to see this little being inside of me and in turn to show everyone the ultra sound pictures. Two days later I got the call from my doctor’s office at work telling me that there was an abnormally large pocket of fluid on the back of our baby’s neck which could signify a chromosome abnormality. I don’t remember much of what the nurse told me during the remainder of that phone call. The thought that there was something wrong with our little one is all I could think of. I immediately dropped to the ground and broke down in a sobbing mess. That call would lead to a string of events that would test our strength, love and faith for one another. It is among many days in my life that I will never forget.
My doctor’s office immediately set up an appointment for the next day to speak with a genetic counselor, down in London at LSHC. Brandon unfortunately couldn’t come with me because of work, so his mom was able to go with me thankfully, so I wouldn’t have to go alone. So many thoughts ran through my mind leading up to this appointment. “Is there something I did wrong?”, “Is this because I forgot to take my prenatal vitamins a couple of times?” “What is going to happen to our little one…?”
Needless to say I was not prepared for what the geneticist was about to tell us and to be honest it is still a bit of a blur. Our genetic counselor was very kind. She took her time and explained everything in great detail and then again when we asked her to just to make sure we understood everything. We were told that there was a patch of fluid on our baby’s neck was referred to as Cystic Hygroma <2> meaning that there was a 50-60% chance that our new little one had some sort of genetic disorder (Trisomy 21, 18 or 13) <3> and that we were also at a very high risk for miscarriage as there was also Fetal Hydrops <4> present. At that point were not expected to make it past the 18-20 week mark. She explained all the different syndrome’s our child could possibly have. All of which seemed terribly frightening at the time.
And then we were presented with our options. We could either 1) have a CVS (Chorionic Villus Sampling <5>) test done in which we would need to decide on immediately because of where we were in the pregnancy. As well because the procedure would need to be booked immediately and we would need to go to Toronto for it. 2) Have an Amniocentesis <6>, 3) let nature take its course or to 4) abort the pregnancy and walk away from this nightmare.
I knew there was no way I could go through the CVS testing as we would need to make a decision on the spot and it just all seem to rush. Brandon and I put a great deal of thought into deciding what we wanted to do and how we were going to proceed. We also took the time and talked to our families. We ended up deciding to do an amniocentesis as we knew we couldn’t go through the entire pregnancy not knowing what was wrong with our little one or worry knowing there was something possibly wrong. Even though it was heavily suggested that we abort the pregnancy we are not comfortable doing so. This baby was made with love and we felt it deserved to be brought into this world with love and given the best of everything we could give it.
Two weeks later (the Tuesday after Thanksgiving) I went in for the amniocentesis procedure in London. I was so scared about the whole thing – “Would it hurt?”, “How big is this needle again?”, “Will our baby be okay?” I can’t say that it was a quick and painless procedure, but was happy when it was all over. We received the initial results from that testing (via a phone call) within a couple of days from our genetic counselor. The initial results show that baby has Down Syndrome. In one sense we were relieved that it wasn’t anything worse but sad at the same time. We were sad that our baby would have some difficulties to face in life. But then again, what child doesn’t?
Once we found out the initial results we began to share the news with family and friends. Quite a few of our family and friends told us not to trust the results from the amniocentesis, that the results were often wrong. But in our hearts, we knew it was right. The detailed ultra sound that we had a couple of days later verified these results. The ultra sound detected one of two things with our baby. One being that the Fetal Hydrops had disappeared and we were not at such a high risk for miscarriage anymore. The other thing being detected was that our baby had a very severe dual heart defect which would require surgery possibly within the first few months of life. I think finding out that our little one had heart problems made me even sadder than finding out about the Down Syndrome. At this time we decided to also find out the baby’s sex. We were told that we were expecting a little boy, with whom we would give the name, Carter.
After our detailed ultra sound, we were immediately rushed to pediatric cardiology to speak a cardiologist who carefully explained our baby’s heart condition to us. He informed us that our baby has a very large hole in its heart located between all four chambers, where the blood coming into the heart and going out of the heart to the other organs of the body are mixing together. This type of hole is called AVSD (Atrioventricular Septal Defect) <7>. As well the pulmonary artery of the heart, which brings blood to the lungs, is was very narrow is size. This type of defect is called Tetralogy of Fallout <8>. As well the cardiologist thought there was a very good chance that we would have to deliver in Toronto, unless there was some significant change in the months to come.
Amongst finding out the news of our little one, we were in the process of purchasing our first home, packing, and getting ready to move. Life was very busy for us at that point in time. We tried our best to carry on with our daily lives and be positive while having very heavy hearts of the news. But life as it did carry on and we began to look forward to meeting our little one.
However we were hit with another blow of bad news during one of our appointments in Mid November. Our latest ultra sound showed that our little one had developed two patches of edema <9> - one patch being located on the forehead and the other around his already fragile heart. Needless to say we went into panic mode – “What does this all mean?” “What would happen to our little one?” Our obstetrician first explained what edema was and what our next steps would be. At that point he felt it would be best if we wait a couple of weeks and see if the edema progressed and then go from there. We went back two weeks later and had an ultra sound which miraculously showed that the patch of edema surrounding the heart had disappeared and the patch on the forehead was reseeding. Our obstetrician told us that this is his third case in his thirty-seven year career where this has happened before. We could not have been more joyous at that moment – we like to consider it as our Christmas miracle.
After one of our many appointments, we ran into our geneticist, who had just had an appointment with another young couple with a similar situation, and was wondering if we would be interested in connecting with them. We said yes immediately as we thought it would be nice to go through this process with someone else and then hopefully in turn become lifelong friends. Jen and I immediately connected through e-mail and swapped stories of our pregnancy journeys up until that point. It was so nice to be able to talk to someone who was going through what we were and who felt what we were feeling.
In early February we had the privilege to tour the NICU where our little one would be spending its first few days plus of life. While there we had the opportunity to meet a little one with Down Syndrome and I have to admit I fell in love. Her name was Hazel. She was so beautiful amongst all the wires and tubes she was hooked up to. But seeing all of this was hard too, knowing that this is what our little one would be faced with too - it broke my heart. Thankfully the nurse giving us the tour gave me Hazel’s mommy’s contact information (with her permission of course) to call should I have any questions or just want to talk. And I did. I had so many questions and Stephanie was great. I felt an immediate connection. We talked for hours. And I felt a little bit more at ease and prepared for what we were about to face.
In one of our final appointments towards the end of February it was decided by our obstetrician that we would induce the labour at 38 weeks because the blood circulation in the umbilical cord <10> between Carter and I was starting to decrease and we risk any additional stress his heart. So we made our preparations for the chosen date of March 9th. But low and behold Carter had his own plans and came on his own, arriving at 7:32am on the day we were to be induced. The delivery went smoothly and was by far much shorter than his sister’s. And we couldn’t have been happier to hold our precious little bundle and finally just meet this little miracle that would indeed change our lives forever.
We spent 18 days in the NICU with Carter. He was in the best of care with many wonderful nurses to look after him and adore him. Carter had troubles feeding while in the NICU and was slow to gain weight, but I was persistent and learned to do things on my own for Carter. By our last few days in the NICU I was able to do everything that the nurses were doing and Carter was sent home with NG tube. Not an ideal situation, but still manageable one. Once home Carter continued to amaze us – kicking the NG tube after 3 weeks, gaining weight and height at a significant pace.
Carter is such a joy and we couldn’t be happier to have made the decisions we did. He is such a happy baby, so content, always smiling and laughing. Carter’s therapy team from CPRI London say he is right on par with his fine and gross motor skills, which can be compared to most “normal” babies. Carter is not afraid to show the world who is and what he can do despite his circumstances, leaving us all amazed. Carter was rolling over at a month and half old. He can reach and grab his toys, bring those toys to his midline and to his mouth. He can sit up while assisted while maintain good steady neck and head control. His BIG sister Dakota is his biggest encourager. She is completely in love with her little brother and is such a big help when it comes to taking care of Carter. Although this journey has been difficult for her too. Dakota tries very hard to understand what is going on with little brother and asks lots of questions. We as parents have hopefully done our best to explain it to her.
Carter is now starting to slow down quite considerably and is showing signs that he is ready for surgery. It is hard to watch him struggle to feed and play. Now that we know the date of his surgery and that it is soon to come, we couldn’t be happier. And to not have to worry about his fragile heart and having it hold him back. However that doesn’t mean we still are not nervous and scared for what is to come. But knowing that he is in the best of hands medically puts us somewhat at ease. Carter is very lucky to have some great role models to follow (Gage, Hazel and Ella!), lots of angels to watch over him and even more people to pray for him and his well being. Thank you to all our friends and family and to those people we don’t even know for your kind words, but most of all your prayers. You have made this journey less difficult. You inspire us to be better, to do more to raise awareness for those with Down Syndrome, but most of all remind us to enjoy the little being that Carter is. So I say again, Thank You, thank you from the bottom of our hearts. We are so lucky and so blessed.
Below are some quotes I came across while still pregnant with Carter that made our journey less difficult and gave us faith to care on. Perhaps they could do the same for you during a hard time and when it’s hard to see what the future has in store for you.
"Faith: Faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1"
"Someday everything will all make perfect sense. So for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason!"
<1> To read more about IPS testing, please refer to the following website https://www.mountsinai.on.ca/care/pdmg/tests/ips
<2> To read more about Cystic Hygroma, please refer to the following website http://www.childrenshospital.vanderbilt.org/services.php?mid=8705
<3> To read more about Trisomy disorders, please refer to the following website http://www.biology.iupui.edu/biocourses/N100/2k2humancsomaldisorders.html
<4> To read more about Fetal Hydrops, please refer to the following website http://emedicine.medscape.com/article/974571-overview
<5> To read more about CVS testing, please refer to the following website http://www.babycenter.ca/pregnancy/antenatalhealth/testsandcare/cvs/
<6> To read more about Amniocentesis, please refer to the following website http://www.babycenter.ca/pregnancy/antenatalhealth/testsandcare/amnio/
<7> To read more about Atrioventricular Septal Defect (AVSD), please refer to the following website http://www.aboutkidshealth.ca/En/ResourceCentres/CongenitalHeartConditions/UnderstandingDiagnosis/DiagnosisofCongenitalHeartDefects/Pages/Atrioventricular-Septal-Defect-AVSD.aspx
<8> To read more about Tetralogy of Fallot, please refer to the following website http://www.cincinnatichildrens.org/health/t/tof/
<9> To read more about edema, please refer to the following website http://my.clevelandclinic.org/disorders/edema/hic_edema.aspx
<10> To read more about fetal and newborn blood circulation, please refer to the following website http://www.childrenshospital.org/az/Site636/mainpageS636P0.html