Caton’s Story- Down Syndrome Diagnosis After Birth (and a very rare heart disease)

Our journey into the Down Syndrome adventure might have had a bit of a different start than others but it was an adventure all the same.

Caton is our blessed number seven child and our third planned homebirth. In between baby number six and Caton we experienced a miscarriage at 12 weeks. So, when week twelve rolled around during Caton’s pregnancy and my midwife could not find the heartbeat we prepared ourselves for another loss

We were elated when we went for our ultrasound and saw our sweet little lady swimming around and her  heartbeat was good and strong.

Praise the Lord!

The next day my midwife called and said that they had some concerns about some of the fluid measurements which could indicate Down’s Syndrome. Now, my reaction might be different than others because the Lord had already prepared my heart years earlier to receive the blessing of a child with Down’s Syndrome.

I was ready, I couldn’t believe I was chosen by the Lord for this special honor. I was still quite naive to all the work and challenges that the Down Syndrome journey would involve, but I was ready for the joys and hugs to come.

Our first priority was to make sure our baby’s heart was okay and we would be able to continue with our plans for a homebirth.

We went back for a 16 week ultrasound and that’s when our world was rocked. The report took forever to come back (normally results in 24 hours, we didn’t see our report for 4 days!) When our midwife did finally get the report she forwarded it to us and I saw it on a Sunday morning five minutes before leaving for church….my husband was rushing the kids to the van and I was sitting in my chair absolutely stunned, tears streaming down my face. He looked at me and said “what?” all I could answer was “I have no idea, but it doesn’t look good for Caton.”

The report showed signs of brain calcifications and in utero infections. I was prepared for Down Syndrome, but not for a child with brain damage or severe mental handicaps. Our midwife referred us to her back-up high-risk doctor. We went the next day for another ultrasound in his office. Praise the Lord, the technician saw no indications of brain calcification or other signs of in utero infections, the nuchal fluid still measured right at the point that they could refer us for genetic testing but we were not concerned about that, we were already prepared for a Down’s  Sydrome diagnosis.

They recommended we come back at 30 weeks for another ultrasound and then determine whether we would deliver at home or in the hospital with a NICU team available. The remainder of the pregnancy was uneventful except for the fact that I was over 40 and had gallstones!!!

At 30 weeks, the doctor was happy with her growth, her heart looked good and the nuchal fluid was still there but measuring right on the borderline. We were given the go ahead to deliver at home and I began to wonder if maybe she might not even have Down Syndrome. I began preparing for our homebirth, which was going to be right around Christmas time.

In my mind, I had this magically Christmas experience planned for our whole family. For some reason I had this though in the back of my head that things weren’t going to go as normal…normal deliveries and babies were my thing but I just seemed to have an uneasy feeling about how all this was going to pan out.

Little Miss Caton Josephine began surprising us from day one! She came quickly and without much warning a few days early. She came so quickly my husband, Randy, got to be the one who delivered her!! We had done this homebirth thing before so we knew that we didn’t need to panic, we simply delivered her and waited for our midwife to arrive.

Caton was a bit purple, but I kept her close and made sure she was crying and warm as we cleaned her up. My midwife called the Down Syndrome immediately when she arrived and met Caton, she prepared us for our first hurdle which would be getting her to latch and suck. She left us with some formula and a medicine dropper so we could keep her hydrated as we worked on breastfeeding/pumping, she assured us it would just take her a bit longer but she would figure it out eventually.

The reality of Down Syndrome hit me that morning, my heart was excited yet scared of the unknown. Randy immediately started googling to get as much info as we could so that we could make sure we helped her get this “sucking” thing down quickly. We had shared our ultrasound rollercoaster rides with some of our family, our church family and our pediatrician, so many in our circle knew we might be having a baby with DS, but when the time came to actually tell people that Caton had Down Syndrome, I had a hard time sharing without a few tears spilling over.

I didn’t understand why I felt like that, I was excited about our baby and who she was and who she was going to become, but I guess my fear was that people would feel sorry for her or for us – I didn’t want people’s pity, I wanted them to rejoice with us on the arrival of our precious new little one.

Probably the biggest difference to our story than most is that we were the ones telling all the doctors and nurses about the Down Syndrome diagnosis rather than the other way around.

So, in a sense we had the “upper hand,” we set the tone for everyone’s reactions.

Our first call was to our pediatrician’s office and told them about the Down Sydrome and asked when they wanted to see her. We weren’t able to make the appointment that they had available that day, so we scheduled a visit for the next morning.

Caton was having a hard time regulating her body temperature, she would turn purple if I didn’t keep her skin to skin. So, needless to say we were on the phone with my midwife and nurse at the pediatrician’s office off and on all morning.

Our pediatrician called during his free appointment time that he had available and we talked about all that had gone on with the delivery and what we were experiencing with Caton. He trusted our instincts and abilities, even with a baby who had Down Syndrome, but something in his gut wanted to see her before the next day, so he made arrangements for us to come to the office after his scheduled work day (we have a great pediatrician!)

This is when chaos broke loose.  By the time we arrived at his office Caton had spent the 30 minutes in the car seat apart from me without our skin to skin contact. Our doctor was immediately concerned (and shaking) when he saw her, that’s when I started getting nervous. We were only in his office for about 3 minutes when he stuck his head out and instructed the front desk to call the squad to take us to the emergency room.

At the emergency room they had Caton under a heat lamp and they were blowing oxygen on her, and called the nearest children’s hospital to come and transport her. I was still in a bit of shock and almost feeling like all this was unnecessary since her color was looking good again and her breathing seemed normal.

I was still in an anti-hospital/intervention mode at this point but I was wondering what was wrong with her? How long will they hold us “hostage” this is going to ruin my Christmas plans? Was it the Down syndrome, why is everyone freaking out? Was it something else? When the NICU transport team arrived things got even worse.

I immediately had my momma bear attitude in motion, I didn’t understand why they needed to hook her up to everything, how long was this going to take – I could have had her to the hospital a long time ago just by driving her there! When they were finally to the point that they were about ready to transport her the nurses seemed to breath an exasperated sigh with an “oh, no” comment.

That was when my world fell apart, they said “we need to intubate her.” What!?! My baby on a ventilator!!! What in the world is going on! She just has Down’s syndrome, she’s fine, what in the world is wrong?

Once we arrived at the children’s hospital we found out Caton’s heart was about 5 times the normal size. If you are reading this story then you are probably already familiar with the commonality of heart defects with Down Syndrome, but Caton’s heart disease is a little different than the normal DS heart issues.

Caton was diagnosed with Ebstein Anomaly of the Tricuspid Valve which is a rather rare congenital heart disease that is not associated with Down Syndrome and the combination of Ebstein’s with DS is even rarer.

Our primary cardiologist basically summed up her initial condition as a muddy mess….there were all kinds of things going on that made her situation touch and go for the first several weeks. One doctor said she basically got dealt a “double whammy.” I’m not certain if I corrected him or just told the nurse that was not true, Caton was fearfully and wonderfully made.

I know Caton’s Creator intimately and He doesn’t “whammy” anyone, He had skillfully knit her together in my womb. In fact my prayer on the way to the hospital was “Lord, you knit her together and You know exactly how You made her, please reveal that to us and the doctors so that we will know how/what to do to preserve her life.”

Caton is our little Christmas Miracle of 2016, the Lord brought her through all the critical life issues without the need for heart surgery, when we were on our final days at the hospital one of the heart doctors actually said, “Well, she sure showed us, didn’t she?”

We spent 8 weeks in the NICU, the last 4 of which were basically just trying to get her to eat enough to sustain herself. We finally came home with a feeding tube and leaking heart valve, both of which are manageable. I still have days that I’m overwhelmed with the “extra” work that caring for a baby with an extra chromosome brings, combined with the responsibility of six other children, but I rejoice in the grace and glory of our Lord Jesus Christ and His plan for our family.

It wasn’t until about 3 months old that I actually came in contact with my first “negative” comment about Caton’s Down Syndrome diagnosis. Someone actually asked me if “there was something mentally wrong” with my baby…momma bear back up again…but the Lord brought me to a place that I could handle the reality that not everyone understands the blessings of Down Syndrome (or 7 children in general for that matter) and that’s okay.

The most important message the Lord has laid on my heart to proclaim is that EVERYONE is fearfully and wonderfully made and the Lord has a special purpose for each and every one of His creations!! Our journey with Caton and six other “typical” children has certainly been quite precarious but I believe the Lord has been magnified in the midst of our circumstances and He has certainly used every situation to shape us and draw us closer to Himself!

May the Lord bless you and your family throughout all the ups and downs of this crazy thing we call life and your special tour of Holland!!

Tyan is a mama to 7 of God’s blessings, she likes to read, try new recipes (especially if she doesn’t have to clean the kitchen afterwards!) and sew. Her proudest accomplishment was the day she met Jesus and knew she was truly loved by Him, she likes to share that is  the day her life truly began. In her spare time she likes to make stuffed animals and toys for her kids.  Tyan is also an avid lover of all things chocolate.