Laura’s story – Part 2 (The Diagnosis)

Sometime after Laura was born I was allowed to go shower and my husband was introduced to the world of diapers and swaddling – I’m fairly certain the nurse redid the whole thing but it was a nice try. After I cleaned myself up we were brought upstairs to the maternity ward where my parents came to visit us very early in the morning and came bearing food –

the heavens parted and from the light came an angel in disguise bearing sweet, sweet egg mcmuffins.

I was so hungry I would have eaten my left foot.

At around that same time, one of the ward nurses decided to test Laura’s blood sugar levels as it was pretty common for large babies to have low blood glucose levels. I took this as a compliment to Laura’s impressive girth:) Laura’s blood sugar was, indeed, a bit low so the nurse said that I would need to give her some formula to help her out. I hated that. I had decided early on that I would breastfeed my baby because breastmilk is this amazing thing that a woman’s body produces that is designed perfectly for her baby! Of course I wasn’t going to say no but it hurt more than it should have – not having slept in over 24 hours by this point probably wasn’t helping the situation.

Laura guzzled her ounce of formula in about 1.2 seconds and I realized that maybe she was a bit hungrier than what my 7 drops of colostrum could satisfy. While my parents were  there, the nurse checked Laura’s glucose again and it was still low, so this time my mom fed Laura her ounce of formula – as before, she guzzled it down like it was nothing.

When Laura’s blood sugar was still low a couple of hours later, the nurse grew nervous and said that we’d try one more time. This time, Laura was not at all interested and really didn’t want the milk – but the nurse said she needed it so she force-fed it to her. I am by no means saying that this was the wrong call – it was just tough to watch. There was still no change so the nurse decided to call in my doctor.

At this point we weren’t really concerned so we waited for my doctor’s shift to start – no point in getting her to come in early for what was probably nothing. In this time, my husband napped and I looked at and fed my beautiful little girl (the feeding was more for my practice than for her being that she was stuffed). When my lovely doctor arrived, she noticed an ever so faint bit of bluish purple in the middle of Laura’s bottom lip so she decided to take Laura to the nursery for a pulse oximetry test (this measures the amount of oxygen that is travelling in the blood stream – it’s just a sticker on a finger or a toe).

When they hooked Laura up to the pulse oximeter, it read 62. For those of you who don’t know much about oxygen saturation, the saturation (sats) really ought to be between 98 and 100. We looked at the number and then we looked at the baby – if the baby is pink, she is clearly receiving oxygen – the machine must be broken. We tried another sat probe (the sticker they use to measure the O2) and then another monitor entirely but we never got a reading much above 80.

While the doctor and a few nurses gathered around trying to figure out why this stupid machine wouldn’t give us the right number the NICU team showed up. They listened to Laura’s lungs and they sounded clear and strong. They listened to her heart and it also sounded good. One nurse, however, was pretty sure that she heard what sounded like a faint murmur so she thought it best to take Laura down to the NICU for some tests. We needed to get a good oxygen reading anyways and their monitors were better.

We walked Laura down to the NICU and then were told to leave while they got her an IV of D5NS (a fluid and electrolyte replenishment and caloric supply used as a source of water, electrolytes and calories) to help bring up her glucose and to take some pictures. We have come to know that “taking pictures” means doing x-rays and ultrasounds but we didn’t know that at the time so the whole thing seemed pretty harmless. We headed back up to our room and got about an hour of sleep before it was time to go down and see our little girl in the NICU.

When we arrived we signed in at the front desk with Laura’s patient number and were told where we could find her – she had been moved to a more acute bed (for slightly sicker babies) than where we had left her. When we arrived at her bedside she had a UVC line in her umbilical stump allowing her to receive the sugar that she needed to raise her glucose levels. She also had her stomach pumped because she had been given too much formula earlier that morning and had reatined the lovely NG (naso-gastric – feeding tube) tube that they had used to pump her stomach (we didn’t know at the time that it would be 6 months before that silly thing came out for good). After explaining the protocols for the NICU, the nurse asked us if we had been told anything and we responded that we hadn’t. Shortly after that a doctor came and introduced himself as a pediatric cardiologist. As soon as I heard his specialty my heart sunk – why did my perfect little girl need a cardiologist?

                “There is something wrong with Laura’s heart…but we can fix it.”

This was the most difficult and most perfect thing that I heard throughout our journey. He had chosen his words so perfectly and I’m not sure that he knows how well he did – his words were clear, concise and uplifting.

He led us to an empty board room where he explained what they had found – Laura had a congenital heart defect called Transposition of the Great Arteries. In a nutshell, the two main arteries of the heart – the aorta and the pulmonary arteries, were connected to the wrong ventricles. In a healthy heart, the aorta pumps oxygen-rich blood from the left side of the heart to the body and the pulmonary artery pumps blood from the right ventricle to the lungs. In a heart with Transposition of the Great Arteries (TGA), the aorta is connected to the right ventricle and the pulmonary artery is connected to the left ventricle. What this means is that rather than oxygen entering the blood stream and being pumped to the rest of the body, the oxygen enters the heart through the lungs and then circulates right back to the lungs. The body does not receive any of the oxygen-rich blood that it so desperately needs. The only reason Laura had remained stable and pink was because of a small hole called an Atrial Septal Defect (ASD) at the top of the chambers of the heart which allows some of that oxygen-rich blood to be delivered between the chambers and carried throughout the body. This hole normally closes 24 hours after birth so she was immediately started on a hormone called Prostaglandin (Prostin) which prevented that hole from closing.

Before this experience I knew that humans had hearts and that the heart pumped blood throughout the body. That’s it. That was my knowledge of the human heart and I sometimes wish that I was still that naïve. At the same time, though, I love all of this knowledge that I was able to accumulate – lifelong learning at its finest – I am a teacher by trade after all.

After explaining Laura’s defect to us, the cardiologist explained that in order to fix her heart, we would need to be flown by air ambulance to Edmonton, AB – about a 5.5 hour drive or a 45 minute flight to have her corrective surgery. He ensured us that the Stollery Children’s hospital in Edmonton was the best hospital we could hope for and that they would take very good care of our daughter. We were told to expect to leave in 3-5 days and have surgery shortly after that. We said our goodbyes and my husband and I went to see Laura again for a few minutes before heading back upstairs to my room to process the information we had just been given.