Our journey with SPD began long before Nora’s official diagnose at age 6. It began even before we welcomed our baby girl into this world. In May of 2003 I was 32 weeks pregnant with my third child. I had just celebrated my 30th birthday and was busy chasing around our two other daughters who were 2.5 and 4 years old at the time. One beautiful spring afternoon I had a regular check up with my OB. I was looking forward to an afternoon alone as my husband had taken the afternoon off to watch our other girls. During the appointment my OB asked if I would pop down for another ultra sound as he was a little concerned with my size. I had the routine 18 week ultra sound and at that point everything in this pregnancy had seemed normal. I was young, healthy, and had 2 previous uneventful pregnancies and births so he was not overly concerned but just wanted to make sure this baby was not bigger than what we were expecting. I remember being more concerned with my lost alone time at Chapters than the technician finding anything wrong with the baby.
The next day my OB called and said that something had come up in the ultra sound and asked us to head to Kingston to see a neonatal specialist (we were living in Trenton, ON at the time). Our OB had already spoken to the doctor in Kingston and he was expecting us that afternoon. When we arrived we met with the specialist and he did is own ultrasound to confirm what he already knew. Our baby had a condition called “Duodenal Atresia” which was a blockage in the fetus’s duodenum which increased the level of amniotic fluid (or polyhedramnios) in the uterus. This left me at a high risk of pre-term labour and this explained why I was so big. In utero, Nora was fine but the blockage meant that nothing was going past her stomach and this was increasing the size of her stomach. It meant that soon after she was born she would need surgery to correct the blockage and medication to help teach her bowels or duodenum how to work. During a typical pregnancy a fetus swallows amniotic fluid and it travels through the digestive system which gets the system ready for after birth and maintains a good level of amniotic fluid. I won’t lie, our heads spun a little that day in trying to understand all that was being told to us. On top of that the neonatal specialist recommend draining some of my amniotic fluid off immediately so that I could make it to at least 36 weeks. We also learned that day that this type of blockage is a marker for down syndrome so they recommended genetic testing so we could plan and prepare for bringing a special needs baby home. So I had a litre of amniotic fluid drained off, gathered all the information they gave us and we made our way home. That was hands down one of the longest days of my life.
A week later we were back in Kingston for another ultra sound and to make a plan for the coming weeks in hopes of carrying this baby as close to term as possible. The doctors in Kingston knew Nora would need to be transferred to Sick Kids in Toronto immediately after birth so they gave us the option of continuing my prenatal care in Toronto at Mt. Sinai Hospital (which is across the street from Sick Kids). We agreed and for the next 5 weeks we made the 2 hours trek into Toronto for ultrasounds and blood work. On one of those trips a neonatal specialist discovered a hole in Nora’s heart (which is another marker for down syndrome) and that had them putting me on partial bed-rest and draining more amniotic fluid off. The doctors felt it was vital to get me as close to term as possible so Nora would have the best chance after birth. It was during my 36th week of pregnancy that we received the amino results which showed that Nora did not have down syndrome and we, as well as, our team of doctors all breathed a sigh of relief. We were also given the option of finding out the sex of the baby. This was exciting as we had never found out the sex of our first two until they were born but felt we deserved a little lift up! We were both so excited to hear we were having another girl!!
On June 17th, 2003 during my weekly check up our head neonatal specialist felt it was time to bring this baby into the world. My amniotic levels were high again so I would need to have them drained or be induced for labor. So we went home and packed our bags, called the grandparents, and made our way back to Toronto. 3 days later at 6:05am with a team of specialist and my husband in the room Nora arrived! I didn’t even get to see her as she was whisked away to be stabilized. With this type of blockage her stomach was 9 times larger than it should be so it needed to drained of amniotic fluid. She was struggling to breath as the stomach was pushing on her tiny lungs. I sent my husband with her and called my parents who lived in B.C. so they could talk to me until I was able to see Nora. An hour later Byron pushed me in a wheel chair to the ICU so I could meet our little girl. I had two typical pregnancies and births so I knew what it was supposed to be like. I knew what it felt like to hold your baby moments after they are born and to breastfeed right away. Sonseeing your tiny baby hooked up to a million cords with machines beeping and alarms going off was so heartbreaking for me. However, from the very first moment Nora grabbed onto my finger I knew she was a fighter. So my husband and I prayed and cried and prayed some more.
5 hours after Nora was born she was transferred to the NICU across the street at the Hospital for Sick children. Less than 24 hours after I gave birth I discharged myself from the hospital and walked over! At 3 days old Nora underwent surgery on her duodenum. As it turned out it was not actually a blockage but her stomach and duodenum had not actually grown together. It is a congenital birth defect that affects 1 in 10,000 babies with 75% of those babies having down syndrome. The hole in heart was ruled as an innocent heart murmur by the cardiology team and they would watch it as she grew (by the time she was one it had closed). After the surgery Nora began to thrive and although she was fed through a GI tube I could pump and she was fed breast milk. Her stomach began to shrink down to normal size but because of its enlarged size she often vomited. She was given a medication that helped her intestines do the job they were suppose to do and by 2 weeks she was off the medication and things were looking good. So good I decided to go home for the night (I had not been back to see the other girls since Nora was born) and leave my husband with Nora. As I left he joked that she would be fine and he was looking forward to some daddy/daughter time in the NICU.
The next morning my husband called and said I should come back sooner than later. Now he was a search and rescue pilot for 20 years so he is pretty relaxed and doesn’t often panic but I could hear the panic in his voice. Thankfully for us we had his parents close by so off I went. Nora had developed a serious infection in her blood stream and had become septic. To make matters worse it was a yeast infection and the infectious disease team was culturing it but could not find an antifungal medication to treat it that was approved for pediatric use. Over the next day Nora’s health rapidly declined and we were told to prepare for the worst as her organs were small and not handling the infection well. She had undergone 2 blood transfusions in hopes that would help. The Infectious disease team found a drug that would work but had no pediatric dose so they had to create one based on Nora’s weight. This drug had serious side effects but at this point it was our only hope. Over the next couple days Nora’s tiny little body made small but steady improvements. Enough so that a plan was put in place to continue with this treatment over the next 3 weeks. The drug needed to be infused through the IV over a 4 hour period everyday. As Nora’s health improved we fell into a NICU rhythm and felt ourselves begin to relax.
At the age of 5 weeks Nora was though the worst and was thriving. She was still being fed through a GI tube but was gaining weight and had her first laugh in the Hospital for Sick Children. A week later our nurse practitioner walked in the room and asked if we were ready to take this beautiful baby home. So we began the discharge process of learning to feed her, what to watch for, what not to do, and made a slew of follow-up appointments. A part of me was so scared to bring her home but the other part was so grateful. So on August 1st we left the hospital and took our little family home. The days and weeks that followed were exhausting but we were so happy we didn’t care. The older girls had missed us and needed lots of love and attention. I was still pumping but after a day of Nora being home she latched right on and never looked back. Within a month we had fallen into life with 3 kids.
I look back on that time and often wonder how we did it. I know we didn’t do it alone as we had the support of two sets of grandparents, friends, and the best medical team in the world. We had our faith, prayer, and each other. In the months that followed Nora thrived and her big sisters fell in love with her. Our oldest would hold her for hours if we let her. Our middle daughter loved to make Nora laugh. Nora gained weight fast and although doctors had told us to expect her to be slow to gain weight she tripled her birth weight by her first birthday. We had been prepared that she may not reach milestones at typical age but she proved them wrong again. Though she liked to take it to the far end of each range she always made it under the wire.
Sometimes I look back and wonder if there were signs of SPD early on but in truth we were so busy I would not have noticed. It was not until Nora hit about age 2 that we began to see the signs. However, I do think all that played a factor in her development but when you know what the outcome could have been a little SPD is nothing. In just over a week our little fighter will be 14 years old. She will go to grad dinner she doesn’t want to because it will overwhelm her but she better than anyone knows how to do hard things. Today that sweet, beautiful, baby is thriving and growing and changing our world just by being who she is. I look at all my girls and my heart fills with pride. The big ones for all their love and support of Nora, for teaching her the things we parents can’t. And pride for a little baby who turned our world upside down (and still does today) and taught us all how do to hard things.