After the initial shock about Novas diagnosis we had a busy time.
Immediately after Nova was born she was transferred to another hospital, which is about 80 km away and has a neonatology unit. Linus and I were allowed to follow only the next day with a special transport, because they did not want to drive me so soon after the emergency C-section. Only in that hospital, about 20 hours after Novas birth, we learned that Novas appearance had a name: arthrogryposis. I had received heavy doses of morphine and being impaired by that, I seriously thought that those massively malformed joints are something temporary, something that will fix itself soon. The news that this was a rare condition which would have an impact on Nova all her life, hit us hard.
Nova, 2 days old:
We did not have too much time to be shocked, as instantly after Novas condition became official, a medical machinery started that I was not prepared for. On day 6 after her birth, she received her first pair of casts.
This serial casting method named after Ponsetti is the standard therapy for club feet. But with AMC the joint malformations are a result of contractions, which means that the joints are not only malformed, but also very stiff sometimes and thus difficult to correct. Novas serial casting went on for nearly four months, every week she got a new pair. As Novas knees were very stiff, the casts sometimes just came off by themselves and I needed to make quite a few extra tours to the emergency unit in between those weekly castings. That was sometimes not easy as not every orthopedic knows about AMC and its peculiarities.
On day 8 of her life, Nova got her first pair of hand splints from the ergo therapists. Those were handmade especially for Novas hands, which she had to wear at night times and were supposed to correct her wrists and fingers. Those splints also needed to be checked and adjusted constantly. This treatment was a full success, because after 22 months her wrists and fingers were so good that we could skip this annoying treatment. According to the hand surgeon, probably no surgery will be necessary.
Eventually a speech therapist appeared on the scene as even Novas jaws are slightly affected. One can see it today only when she yawns. She cannot open her mouth as wide as other kids, but this does not seem to disturb her eating and definitely not her babbling and chattering.
After a while I realized that Novas team had become quite big:
- A pediatric neurologist, who is Novas main rehab-doc and the spider in the net, so to say. He coordinates all therapies, all the treatments and all records.
- By his side there is a pediatric nurse, who weighs and measures Nova regularly and collects the data.
- Another nurse who works in the pediatric unit of our local hospital and is responsible for all “normal” illness issues (like e.g. the flu that we all had about a month ago). Plus she also coordinates everything that has to do with Novas gastrostomy.
- A third nurse, who works in our local small health center and monitors Novas development outside of her condition: vaccinations, eye check, hearing checks, all the stuff that “normal” children also have to go through.
- A couple of dieticians, who all together have disappointed me and let me down.
- Novas orthopedic, this wonderful and competent doctor who is decisively responsible for the fact that Nova can walk assisted today.
- Novas physiotherapist, another key figure in Novas life. She is an incredibly dedicated and competent person who always finds new ways for Nova in a creative way.
- Two ergo therapists who take care for Novas hands, arms and most of the aids, like wheelchair, special seat for the dining table, and a lot more.
- A hand surgeon who checks on Novas upper extremities once a year.
- A brilliant orthopedic technician who is responsible for Novas splints and braces.
That is the core of the team. Of course we have met many more people along our way, but the ones mentioned above are the most important.
When Nova turned 6 months and the serial casting treatment did not show the required results, we decided together with the orthopedic, that Novas feet would be corrected surgically.
It was a surgery that lasted a couple of hours. Quite a lot of the soft tissue was cut through, like e.g. both Achilles tendons, and the feet were fixed with pins.
I had kept myself together all the time, but seeing Nova waking up from anesthesia was kind of lacing my throat.
She looked so fragile…
She received morphine for five days i.v. and she was not left alone for a second. Of course she also had both legs in casts again; this time for 6 weeks.
But even this period passed, Nova recovered well. It took a bit longer for me to digest this surgery and the following ones. Writing about it helps me to close this chapter.
The first six months were dominated by nearly daily visits at the hospital, therapies, check ups, treatments, etc. Only after 13 months we had our very first week completely without any appointment, I remember this so well. There was not much time left for bonding, cuddling, sitting on the sofa in peace and breast feed, play or just watch this miracle of a baby. I indeed started to understand Nova as a person and get to know her only after 7 or 8 months.