By Heather Barrow
No mom-to-be, including me, sees a positive pregnancy test and thinks they will be hospitalized during that pregnancy and deliver a premature baby. Until they do. The same is probably true for most serious health complications. They occur at random and at some point in your life, you or a loved one will experience at least one. I hope your health scare ends the way mine did, with a healthy patient who is a better person because of (not despite) their hospital stay. When you are faced with a life-threatening illness, it is easy to allow yourself to enter victim mode and slowly move through the 5 stages of grief (denial, anger, bargaining, depression, acceptance). I want you to skip stages 1 to 4 and move straight to acceptance. Here are six ways to shift from medical victim to health advocate:
1. Stay Positive. If you are a High Risk Hope family, you know this is our #1 rule. We want our moms and dads to take a moment to allow themselves to cry, get angry and ask “why me”, but only one moment. After your short-lived pity party, make the choice to be positive and optimistic about your prognosis (no matter how bad the medical reports may be). A positive attitude is crucial during this difficult time and will make a difference in your hospital stay and daily interactions with friends, family, doctors, nurses and hospital staff. The only difference between a good day and a bad day is your attitude, and sometimes the only thing you can control is your attitude. Make the choice every day to focus on the positives, remain optimistic and show gratitude to others for the support they give you during your hospital stay or medical treatment. During my hospital stay my husband wrote daily inspirational quotes on our dry erase board so I could have a visual reminder and attitude check throughout the day. Some days I had to fake it until I could make it, but I had more positive days than negative ones. That mindset had a big impact on my health, and ultimately my unborn baby’s health too.
2. Find a support group. Whether virtual or in person, a support group geared towards your medical condition will become your lifeline. From doctor recommendations to managing relationship strains to dealing with the every day trials, these new friends have been there and can offer support and helpful advice. I relied heavily on the preterm premature rupture of membranes (pProm) Facebook support group during my 8 weeks on hospital bed rest and my son’s neonatal intensive care unit stay. The women knew exactly what I was experiencing because they had been there. Not only did they provide advice on things like how to remain comfortable when you leak amniotic fluid all day, they also showed me photos of their healthy pProm babies which helped me remain calm and focused on my prize (a healthy baby boy). At HRH, we take patient support seriously and know our former HRH moms can help current families. HRH moms spearheaded a campaign to form our brand new HRH chatrooms that we hope will grow to support many future patients in crisis.
3. The A-Team. If possible, be treated by the best doctors your insurance company allows. Solicit recommendations from your support group and other friends who have had a similar medical condition. Build your team with doctors who not only have a stellar medical record but also have an incredible bedside manner. It is most important to remember you are captain of the A-Team, and will always make the best health related decisions on your behalf. I was surprised at how much the doctors didn’t know about my condition. Not because they weren’t excellent doctors, but because there are a lot of unknowns with pProm and every case is unique, as is true for most other medical conditions. I learned early on that half of my doctors had never been pregnant (men) and none of them had been on hospital bed rest with a life threatening pregnancy complication. They could not relate to what I was going through, which meant there were some questions the doctors would not know the answer to. I filled that gap with targeted questions and research on my condition. I was empowered with the information I needed to steer my medical team towards the best treatment plan for my family.
4. Get a 2nd opinion. And 3rd and 4th if that is what it takes for you to be completely comfortable with the diagnosis and treatment plan. Even members of your A-team make mistakes but you mitigate that risk by seeking multiple opinions. If you seek multiple opinions, do so quickly and do not use it as an excuse to delay treatment. During my stay, I had the luxury of daily hospital visits from one of the doctors within my OBGYN group. I loved that one-on-one time and used every minute to get to know my doctors. I had a list of questions at all times and consistently asked several doctors the same questions, writing down their answers to ensure I could relay the responses accurately to my husband. They met weekly to discuss hospital patients so they caught on to me quickly, but each doctor always gave me what they thought was the best answer, and the responses varied from doctor to doctor. Rather than become overwhelmed, I was able to utilize the resource of 59 doctor visits to ensure all of my medical questions and concerns were addressed in a manner I was comfortable with. If the need for urgent medical care arrived, even at 3 a.m., I was always fully prepared to make the best medical decision on my (and my baby’s) behalf.
5. Pay it forward. When you are home, healthy and on the other side of your crisis, pay it forward by supporting others facing your same medical condition. There are many ways this can be done and no one way is right for everyone. From donating money to or volunteering for a cause that supported you, to joining your old support group as an advisor, you can find a way to help that fits your comfort level. Just as you relied on strangers to help you, now it is your turn to give the gift that was given to you. For our HRH families looking to give back and stay connected with our outreach, the best way is to register to attend the HRH Tot Trot on 11/15 at Gadsden Park n Tampa.
6. Be prepared for the future. I had another big health scare in 2012 when my favorite OBGYN found a 2-inch tumor on my thyroid, one that my former general practitioner had missed for years. Not only had my A-team paid off again (OBGYNs are typically focused on another area) but our family was fully prepared for this health challenge. I had the tumor biopsied within the week and reached out to a friend who had once had a thyroid tumor similar to mine. I was scared and worried but she took me to lunch and reassured me I was going to be fine. Although the tumor was large, thankfully it was non-cancerous. Unfortunately my entire thyroid still needed to come out, because the tumor completely covered it, and cells can become cancerous over time. After confirming that plan of action with two Endocrinologists, I went to the best ENT surgeon in Tampa and had a full thyroidectomy within the month. Now my friend and I have matching scars and I have reached out to two friends since then who also had to have a complete thyroidectomy (pay it forward). Your thyroid produces hormones which regulate the body’s metabolic rate, heart and digestive function, muscle control, brain development and bone maintenance. So since I no longer have one, I have to rely on a daily synthetic thyroid hormone for the rest of my life, which I will also spend free of thyroid cancer. My past hospitalization enabled me to minimize my fear and anxiety and face this cancer scare and major surgery with determination to make a swift and informed decision.
My family’s three-month stay in the hospital turned us from health victims into advocates. We advocated for our son throughout his stay in the NICU and still do so in both of our children’s daily lives. With any future health challenges, my husband and I will seek treatment and advice from the best doctors. We will use that advice to make the final decision for what is best for our family’s health, and you will too for your family.