One Year Later: A Medical Update

We have now had Wonder Woman in our arms for a full year. I can’t wrap my head around all that has happened, all that we have survived together. As many of you know, and we haven’t been shy to share, it was statistically unlikely that she would live for a whole year. I’d like to take this time to update you medically on where we are at, what her future holds, and answer what I can about her prognosis from this point on.

To say that it was unlikely she would reach her first birthday to me rings as both true and untrue. Because her system is so fragile, there was, and is always, a risk that her health could take a turn for the worst quickly.  But part of it rings untrue to me because I believe it doesn’t take into account medical intervention available to her. Had we not placed a VP shunt to relieve the excess fluid in her head, the pressure would have eventually killed her, probably before her first birthday. Unfortunately, one of the things we’ve found is that medical intervention that would have been standard for a child with just hydrocephalus (excess fluid, but normal brain matter), is not ‘standard’ for hydran babies because doctors automatically give them such a grim prognosis that they immediately (consciously or not) devalue their lives. In fact, I believe if doctors had given my daughter a shunt before she left the hospital that she would have a better quality of life today because she wouldn’t be fighting against the weight of a 9lb head.

During her first year, she always began have feeding difficulties and went from eating 24 oz of formula from a bottle down to only 10. Had we not intervened, this would have progressed and my daughter would have eventually starved to death. What is amazing to me here as well, is that placing an NG or G tube are not necessarily standard care for hydran kids. The medical field in general believes that hydran children can’t feel pain and aren’t aware of their bodies and surroundings, so if they stop eating it’s okay to ‘let nature take it’s course’. Fortunately, God has surrounded us with doctors who are on board with our desire to give our daughter the best quality of life, so she had the feeding tube placed and began to thrive. The combination of the shunt and the feeding tube were the first times we finally began to see Wonder Woman be comfortable and want to participate in the world around her. Before we did these she was in pain and overwhelmed by everything around her that she couldn’t process.

After we handled those things we began physical therapy. One of the conditions Wonder Woman has underneath her hydranencephaly diagnosis is cerebral palsy. Controlling her muscles and movements is a struggle, she always deals with high tone (uncontrollably tight muscles) and spasticity (involuntary muscle movements). We put her on a combination of medicine and botox and began working in physical therapy three times a week to teach her how to hold up her head, how to look at toys, how to reach for things, etc. This is one of the reasons I wish her shunt had been placed immediately. Wonder Woman is a year old and still learning to hold up her own head because she’s working against such a great weight, at times half of her total weight. Physical therapy is hard. She doesn’t always love it, but we keep working and fighting and doing this continues to improve her quality of life. She can now look around for things she likes, like lights and her brothers. She can reach out when she’s being held, and she’s starting to support her own head and preventing the weight of it from flopping her over all the time.

All of these interventions and countless doctors appointments, plus 8 daily meds have brought Wonder Woman to the place she’s at today. She likes to be around people, she looks healthy, she’s comfortable most of the time, and she’s happy, you can see it in her eyes and the occasional smile she gives.

But the flip side to all of this is that we know things could change in a moment. Seizures are a part of life and they always bring with them the risk of cardio respiratory complications and death. Seizures typically increase when kids are sick, so while they are currently under control, that can change quickly. We’ve also noticed big seizures cause set backs in some of the progress she’s made. So far we’ve been able to regain that ground, but after a big seizure she tends to be more grumpy and has lost some of her hard earned physical therapy skills and needs another medicine adjustment. Other dangers include the everyday cold. Because Wonder Woman isn’t very active and has a decreased ability to cough, a cold or other virus, can quickly and without warning turn into pneumonia. Other difficulties include temperature regulation problems, meaning possible hypo or hyperthermia. And then the danger that one thing that goes wrong can affect other things that aren’t even currently a problem, like endocrinology for example.

So what does this mean for our future? It means we take it a day at a time. Last month, 5 children with Wonder Woman’s condition passed away, and more were hospitalized and fighting for their lives. It’s a heartbreaking reality to know that could be our family any day. I expect my little girl to be with us a long time, I am planning our future to have her until John retires and well past that. But I also have to take this one day at a time. Give her medication that comforts her and helps bring out the best, keep her as healthy as possible, be proactive in working with doctors to know potential dangers and warning signs and have a care team on board that I trust and that supports our family. Most importantly, I constantly pray for her health and for our wisdom in caring for her, knowing when to worry, when to fight, and accepting that God will let me know when it’s time to let go.

Look at those babies grow!