Yes, it’s a dramatic title. But I’m hormonal so forgive me. :)
Just when we get this little man home from the NICU and think we’re pretty much in the clear with major health issues, I get a call from his pediatrician's office on Wednesday, May 28th.Every baby at an Illinois hospital has a blood screening at 24 hours and before leaving the hospital. I saw both of Miles’ screenings being done. They use a heel warmer to get his blood flowing more easily and prick his heel. Then they squeeze his heel hard and fill in each one of circles with his blood. This card gets sent to the state where it is screened for all kinds of genetic disorders that may not “show up” with physical signs at birth.
The nurse who called informed me that Miles’ blood screen came back positive for genetic disorder called methylmalonic acidemia. In plain English, people with organic acid disorders cannot break down protein properly. This causes harmful substances to build up in their blood and urine. It would mean an immediate end to our breastfeeding and would mean a lifelong of medicine, special diets, and possible g-tubes and organ transplants.
I had to have her repeat the name of the disorder several times because I felt like I was in shock. She could tell I was trying to not burst into tears on the phone and tried to reassure me that the screening could be a false positive if the initial blood sample was too small or the test was performed too early. She gave me some symptoms to call about immediately and told me the specialist’s office would be calling very soon. She thankfully encouraged me to keep nursing him until I heard otherwise.
Later in the day, I talked with the doctor’s office that will be taking Miles’ case. Dr. Hoganson is a pediatric endocrinologist. He practices in Chicago and Peoria and thankfully, we were able to get an appointment in Peoria for this Thursday, June 5th at noon. My parents will be able to take care of Owen and Ellison so we can both be fully present at the appointment.
The day after we received this call, we had to go do a huge round of blood work that got sent to Peoria. When I went to the lab, I asked them if they used the heel warmers before pricking him. She said, oh we need a lot more blood than that. One nurse held him still while one drew a ton of blood. Thankfully, she only had to try once to get the needle in!The next day they called back to apologize that they had not completely read the orders to see that they needed an urine sample. So another trip to the doctor and we got a u-bag and I spent the morning nursing, checking, nursing, checking and finally getting a sample to take back in. And now we wait. We know nothing except that we will be meeting with Dr. Hoganson, a geneticists, and a dietician tomorrow.Some of the people I know are asking how I’m doing. Honestly, I feel like I handled the birth and NICU stuff pretty well emotionally. And then this was the “straw that broke the camel’s back.” The first day I just cried and cried. Ellie kept saying “mommy sad?” which made it all the worse. I did just a little Google research just to find out a little more about it and prepare myself to ask questions tomorrow. I also tried to find real stories of any infant who has had this to see if nursing was possible (it wasn’t). As of today, I’m just crying when we have a sweet, quiet nursing time. Every time I get a chance, I just lay hands on him and pray that it was simply a false positive on the screening. I’m just choosing not to ‘go there’ yet until I have to tomorrow.
I know that many moms choose to not breastfeed or can’t for a multitude of reasons. And they and their babies turn out just fine. (And more power to you mommas for ANY way that you feed your babies) But to love something so much and to be told I possibly won’t be able to do it anymore is just heartbreaking. Not to mention thinking about what this lifelong disorder could possibly look like for Miles and our family. It’s a little too overwhelming to process.
So if you are the praying type, I beg you to pray for us as we head to OSF in Peoria tomorrow at noon. Pray that it was a false positive on his screening. And pray that if he does have this, that God will provide everything we need to be able to process this news and move forward to be able to do what we need to for Miles’ health. And just pray for my momma heart.
*for more info you can check out - www.newbornscreening.info/Parents/organicaciddisorders/MMA.html and www.oaanews.org/mma.htm