Now that I have opened up about my PPD struggle, I feel that I should open up about the triggering moment. I knew my chances for PPD were high since I’ve struggled with anxiety and depression for many years. While I struggled to adjust after the birth of my daughter, I did adjust. My anxiety and depression never rose to the point that I felt it was stealing my joy as a mother. So, after the birth of my son, I knew I would need an adjustment period to juggle both kids. I was doing well at that. I cannot explain it; but my love grew even more. I like to think of it as a mommy high. I was on top of the mommy world. Little did I know about the wall I was about to hit.
I was not prepared for the call I received from LB’s pediatrician the morning of his newborn pictures. My 5 day old son needed to go to Emory in Atlanta, 4 hours away, immediately for testing. His newborn screening test came back with an abnormality that required immediate testing for confirmation of a disorder. I was devastated, worried, and heartbroken. I didn’t understand how he could have an abnormality when we had such a beautiful birth and he looked perfect. Yeah, we had a breastfeeding issue, but I had mourned that loss and moved on. He did great at his newborn check up appointment at the birth center just 3 days earlier. The drive to Emory was painful to say the least. While my husband drove, I sat in the back with my newborn and cried and prayed. We had a traumatic and exhausting day of blood draws for testing and doctors explaining a rare disorder that he tested positive for. We drove back to Savannah crying and praying. For the next few days I was in a daze. If I wasn’t crying, I was praying to God. Then I got the confirmation call, he had the disorder. Our lives would never be the same. And I cried…
Our son has a rare genetic metabolic disorder called Phenylketonuria, or PKU for short. PKU occurs in 1 in 10,000-15,000 newborns in the US. Basically, he has a gene mutation that severely slows or doesn’t allow his body to breakdown the phenylalanine (PHE) amino acid found in foods with protein. Phenylalanine builds up in the system and can cause brain damage, nerve damage, seizures, developmental delays, behavioral disorders, and psychiatric disorders. The only treatment is to follow a low protein diet, which depends on each individuals’ ability to breakdown PHE. The diet eliminates dairy, artificial sweeteners, meats, nuts, beans, breads, pastas, and some fruits and starchy vegetables. Individuals with PKU eat low protein medical foods and drink low protein medical formulas to obtain the required nutrients for the body to function. Any food or drink must be measured and recorded to know how the meal effects the PHE level. While there is a drug; it is not effective for everyone. Also, you must have blood tests to monitor the PHE levels that can range from several times a week to every few months.
I’ve struggled with this diagnosis. I struggle with the concept of having to draw my son’s blood for weekly tests until further notice. I struggle with contacting his dietician to have a new medical formula mixture adjusted to his growth spurt. I struggle with having to go to Emory every 3 months to meet with the nutrition team. I struggle with having to measure and record every ounce he drinks for a food report that I send out with his blood test. I struggle with eating my own food because I know he will never be able to eat it.
So, this is what triggered the PPD. Until 3 weeks ago, I uncontrollably cried all day long. I would suck it up for a few minutes while I dropped SP off at school and chatted with the other moms, then cry all the way home. I think of my son’s future, of all the things he will miss out on, and cry for him. He cannot have a pizza and ice cream party. If he goes to another kid’s party, he can’t have the cake. When he goes trick-or-treating, he cannot eat most of the types of candy. I think of the possible bullying he could face for having to drink a formula in school and not partake in eating lunch. All of these thoughts, constantly swarming in my head. Every day while I make his formula, I am reminded my son is not going to have a normal life with normal life experiences. Can he be successful? Yes, he can. But his life will not be normal; we will have to create a normal for him. And that breaks my heart.
Although I have come to terms with our new normal, PPD has a grip on me. That is the thing with anxiety and depression; it steals your joy. PPD has overshadowed my happiness as a mother. It only shows me the bad, keeping me with a nasty attitude towards life. It seeps into my ability to be a positive and present mother and wife. To combat it, I make myself see the positive. I listen to SP tell LB she loves him. I watch her give him kisses. I keep moving forward with my broken pieces, slowly gluing them back together with love and positive experiences. I will overcome PPD. I will do everything I can to help LB live a normal life with PKU.