High Maintenance Mom

My friend has graciously allowed me to post the story of her son Cade for encouragement to others and to remind us all how precious life is. Here is Cade's story as told by his Mom.......

When we left the hospital after my son’s birth we knew that he was diagnosed with mild jaundice due to incompatibility between our blood types (I am O+ and he is A+.) The condition is called ABO incompatibility and it occurs when the mother builds up antibodies against the blood type of the baby and passes these antibodies to the baby during the pregnancy. The antibodies attack the baby’s red blood cells and cause them to break down (a process called hemolysis.) When red bloods cells breakdown it causes the breakdown of hemoglobin (the protein which carries oxygen to the muscles, including the heart.) This is what causes anemia. When hemoglobin breaks down it releases a toxin called bilirubin which causes jaundice.

The week following our discharge from the hospital after my son’s birth, his jaundice became worse and he was monitored everyday for his bilirubin levels. This meant a trip to the pediatrician’s office for daily heal pricks for the required lab work which he most certainly did not like. A week after he was born his bilirubin levels spiked to a 17 which required us to put him on home phototherapy treatment using a Wallaby blanket. While he could have gone as a lightening bug for Halloween in this get-up, it unfortunately did not lower his bilirubin levels.
On the 6th day of his home phototherapy treatment we were at the pediatrician’s office for his daily lab work. While we knew that his jaundice was attributed to ABO incompatibility, the doctors began to feel that something else was going on. At this point we were looking at his complete blood counts, as well as trying to rule out breastfeeding jaundice, in an effort to diagnosis why his jaundice did not seem to resolving on its own. During this visit we discovered that his hemoglobin levels had dropped to a dangerously low level and within minutes we were on our way to the Children’s Hospital of Philadelphia (CHOP) to have my son admitted. The fear was that as his hemoglobin dropped, there was not enough oxygen getting to his heart. As we left our pediatrician’s office I was feeling overwhelmed with the situation. I consciously told myself to not start crying and break down as I wanted to, as I knew that I needed to be as level headed as possible for my son’s sake. I knew that I would need to be thinking clearly in order to be able to make the best decisions I could for my son. So in this state of level-headedness that I tried to quickly adopt, I asked our pediatrician the severity of my son’s situation. She told us that my son needed to be in the care of a physician within 30 minutes of checking in at the ER.

Without delving into the details of how we pushed to get my son admitted into the Neonatal Intensive Care Unit (NICU), I will say that persistence was key! Soon after being admitted, my husband and I were signing consent papers for my son to have a series of blood transfusions. It was not exactly what we had envisioned for our 12 day old son or as our introduction to parenthood. As scary as everything was, the doctors at CHOP were amazing. They answered every single question we had with the level of details we needed. They were patient, empathetic, professional, knowledgeable, comforting - everything we needed. My son spent 3 days in the NICU under the intense blue light to cure his jaundice and received two blood transfusions. I didn’t leave the hospital the entire time he was there and luckily I was able to get a sleep room in the evenings. The bed was not at his bedside, but it did allow for me to get a few winks in-between feedings. During these long days, when my husband was not at the hospital, he was driving back and forth caring for our dog and getting me clothes and toiletries. It was taxing on both of us for different reasons, but we had each other to help us get through this difficult time. We were discharged on our 5th wedding anniversary.

Since being discharged my son has biweekly lab work done at CHOP to monitor his hemoglobin levels. His hematologist has provided excellent care for my son and has been available to us for questions at all times, not just during his doctor’s appointments. On October 10th, my son’s hemoglobin, which was trending downward since we left the hospital, reached a 7.5, which is approximately the same level for which we were originally admitted. During that checkup we learned that my son needed another series of blood transfusions and we were admitted to CHOP again that day. Saturday morning, we left the hospital at 3am after his transfusions were over and he was cleared to go home.

At this point we know that the reality of future transfusions will exist for 3-4 months from his birth. This is how long it will take for the antibodies that are attacking his red blood cells to completely disappear. While ABO incompatibility happens in 20-25% of all pregnancies, less than 1% of those cases require blood transfusions. There are just more antibodies in his blood than normal, and his body is not able to make red blood cells faster than the breakdown is occurring. Before the last transfusion we were trying to be optimistic about his condition and hopeful that he would not need any more transfusions. While we still try to be optimistic, we are realistic about what the future may hold.
At this point my son’s hemoglobin is trending downward again (an 8.6 down from an 11.1 after the transfusion) so we feel he will most likely need another transfusion in the next few days.

Through this situation my husband and I have had to rely on each other in new ways. We had to be strong for each other both by being level headed, but also by allowing each other to be sad, scared, and confused. That is not to say I didn’t have my moments of breaking down. When my husband had left the hospital for the night and I was nursing my son, the tears would usually begin to flow, falling from my cheek onto my son’s. I did find solace in nursing him when I could (after he was taken off oxygen and off the light treatment.) Being a parent with a sick child gives a whole new meaning to helplessness, and nursing was one way I felt that I was actually doing something for him, helping him. It was and continues to be difficult being a new mom and living this experience. One of the hardest things is that I can’t explain to him what is going on. I can’t tell him that the IV will only hurt for a second as he’s screaming uncontrollably. I can’t tell him to stop pulling the oxygen out of his nose, or to keep the eye goggles on so his eyes stay protected from the lights. The only way to communicate with him is through touch, through holding him and hugging him as close to me as I possibly can.

My husband and I have a new found respect for doctors, nurses, and caregivers of sick children. We are eternally grateful for those who have cared for my son and continue to care for him. Our hearts have also been touched by the many people we have met at CHOP and elsewhere that have sick children, often times in much worse shape than ours. In the grand scheme of things this is small, and we will get through it. There are so many people that get up every day, trying to live “normal” lives while their children are very ill. In many ways I am not quite sure how they do it, yet at the same time you somehow get used to this life of doctors, hospitals, and tests and it becomes “normal” for you because it has to.

My son has been very strong through all of this and I am able to find strength in myself through him. I figure if his little body can handle all of this, so can mine.