Newborn screening: Sydney's story of life thanks to pulse ox

I heard Sydney's story thought Facebook and immediately messaged her mom to ask if she would guest post on my blog. When reading her story, my heart broke for the babies who are missed during screening and it soared knowing that this little life was saved.

Sydney’s Story
A few days ago I found out that the Minnesota Newborn Screening Advisory Committee voted unanimously for all Minnesota hospitals to perform the pulse ox test on all newborns! This is great news! Fortunately, I gave birth to my baby girl at one of the very few hospitals in Minnesota that performed this test before this passed.
Our little Sydney was born on July 19th at 8:23am weighing 8 pounds, 11 ounces, and 22 inches long. After almost 4 hours of pushing, they decided to use a vacuum to assist in the delivery; five minutes later our daughter was born. Every doctor and nurse that checked her out – listened to her lungs and heart and said ‘you have a very healthy baby girl!’ At this point we had no worries; everyone was telling us we had such a healthy baby. Well that all changed in a matter of 24 hours.
The next day the nurse came in to tell us that they were taking her to do the 24 hour testing. I didn’t know at that point what it all really consisted of; she just simply explained a few of the tests they were going to do. About an hour later the nurse came back to our room, with Sydney, and advised that she did NOT pass the oxygen level testing and that they would be taking her back down to do the same test two more times and if she failed to pass those, an echocardiogram would need to be done. I started to get a little nervous, but figured she had two more chances to pass the test, so I wasn’t going to get overly anxious quite yet. Well much to our surprise the nurse came back yet again and advised she did not pass either of the two tests so an echocardiogram was scheduled for later that day. The nurse did her best to keep us calm and reassured us that all was going to be ok. I lost it at that point and couldn’t hold back the tears, I knew something wasn’t right.
Later that day they performed the echo on her heart and they also took an x-ray of her lungs as her CRP levels were coming back high. After all of the testing they brought our little munchkin back to our room and we went about our day. Since she was only a day old, there were still family members that didn’t have the chance to visit us yet, therefore on that Friday evening we had several first time visitors stop by as well as my sister and two nieces from Arizona who were leaving to go home the next day. It was around 7:00pm when the nurse came in and said they had to take Sydney right away to the Sensitive Care Nursery so they could start her on oxygen. It all happened so fast I didn’t have time to really think things through. All I could think of was the worst – my baby is being put on oxygen, something is not right. The visitors continued to come through the night and we had to explain what was going on and of course it brought me to tears every time I thought of sweet Sydney or had to tell people where she was at.
Fortunately, my sister was there and because of her connections through the organization she works for, HopeKids, she was able to reach out to a few of the moms who have dealt with this same situation and who also knew more about the testing that was being done, etc. After hearing that only a few hospitals in Minnesota, Maple Grove being one of them, I realized how blessed we were that Sydney was at this hospital and had the pulse ox test done. In fact, Maple Grove Hospital recently, just 6 months ago started performing this test along with the other 24 hour tests (hearing, etc.). I didn’t realize the importance of this test until my sister did some more explaining. Thousands of babies have been affected by this test NOT taking place. Heart defects and other issues can be detected by this test and because it is done so early, precautionary measures can be taken to begin treating any issue found. While my husband was in the Sensitive Care Nursery, a doctor came to talk to him and the doctor stressed the importance of this test and said that if the test wasn’t done, they would have sent us home and everything could have been OK. However, there is that 1% chance that we could have been sent home, and then awoken to a blue baby the next day or a few days down the road.
For those of you who do not know the extent of the pulse ox test – it is a simple procedure where a cuff is put on the bottom of the baby’s foot and it measures the oxygen flow/level in their body. A normal range is between 95-100%, and Sydney’s was at 88%. The reason for her low levels could have been because of the vacuum assisted delivery or she was simply just having a hard time adjusting to life outside the womb and needed some help to transition. Without this test our baby appeared healthy, however little did we know that there was a silent killer on the inside. Thankfully her echo came back showing a healthy heart, yet it did show the issues she was having with the oxygen levels. They kept her in the Special Care Nursery for a week as it took her a few days to slowly be weaned off the oxygen and to hold her own levels of 95-100% for 72 hours. Also, because of her high CRP levels, they treated her with antibiotics for 7 days.
I hope and pray that this test will be approved and mandated across the United States at ALL hospitals. There is no reason that a simple test such as the pulse ox cannot be done as a precautionary measure as it could save many lives!!