Friday, November 15, 2013

Maddy's NICU summary

I'm planning to write two posts - this one will be a summary of our experience with NICU with Maddy, the next one (which may or may not appear at any time before the baby is born) are things that I would do differently this time around - IF the situations were more or less the same. 

(For siblings with diastrophic dysplasia, there can often be differences in severity - and we don't know until this little one is born whether she will have the same issues as Maddy or different ones. Often siblings are similar - but not always. We are of course hoping and praying that this little one will be just as healthy as Maddy is, or even healthier!)

Here goes!

When Maddy was born, there were a lot of doctors in the room prepared for whatever the situation would be. At the time, we didn't know her diagnosis. We didn't even know for sure that she would not have a lethal form of dwarfism, although the scans towards the end of my pregnancy looked promising. As soon as she was born, she was very briefly shown to us before she was whisked away to special care baby unit for close observation/testing. We were left in the delivery room for around three hours after this due to the hospital being short staffed. 

After we did leave delivery and I got settled in the ward, Bernard went up to see Maddy. In her first few hours, she began to have some stridor (noisy breathing), insucking (where the ribs are struggling to inhale enough air) and blood acidosis (where she was not expelling enough carbon dioxide effectively). She had been moved into the NICU and was on CPAP. She did very well on the CPAP and her reliance on it was decreased over the next few days and was turned off when she was 9 days old. After that time, she had occasional use of oxygen but was never really reliant on it. We didn't get to hold Maddy until she was 12 days old, and we were only allowed to visit her between 3-8pm. Since we had another child at home who also needed our attention though, realistically we saw her on average for 1-2 hours every day.

Many people ask me why Maddy was in NICU for so long - particularly given that she was healthy and growing, and really needed minimal medical support in the four months that she was there, and the answer is quite complicated. There were two main issues:

1. Airway
From birth, Maddy was showing definite signs of either a narrow airway, or a "floppy" airway. The typical signs were the stridor and insucking. Her lungs were working fine (apart from the acidosis during her first 24 hours) but the airway was a concern. If an airway is dangerously narrow, even a bit of mucus could block the airway completely causing the person to suffocate without prompt and emergency intervention, sometimes in the form of a tracheostomy (where the person breaths through a tube in their neck). A "floppy" airway (tracheomalacia) is less severe and usually babies grow out of it without any intervention. It is important to diagnose exactly which you are dealing with and the severity - and usually this is done via a bronchoscopy.

2. Cervical spine
When Maddy was two days old, we were told that she looked as though she might have a cervical spine instability. It was difficult to diagnose via x-ray and the orthopedic doctors wanted to do an MRI to assess it further. Cervical spine instabilities are also tricky things as if the neck is moved in the wrong way, it could press on the spinal cord causing, as the hospital put it when Maddy was 2 days old, "instant death". 

The problem was that for the bronchoscopy, Maddy would have needed some manipulation of the neck and the orthopedic doctor would not give the ENT the ok to do this necessary test until they had first done the MRI. The MRI on the other hand would have required Maddy to be sedated, and the anesthetist refused to sedate Maddy without knowing the results of the bronchoscopy.

Reading back through my blog posts (if you're really interested, you can read from August-December 2010), it is amazing how early these issues started - I first posted about them when Maddy was only 9 days old. From the age of even a week old until Maddy was discharged at four months old, there was little resolution of these issues and no real plan besides "let's see how she grows and hopefully she will be better when she's older". 

So what changed when she was discharged? They did manage to figure out that they could do a "virtual bronchoscopy" by using a CT scan instead of the usual bronchoscopy procedure. This confirmed that all along she'd had a floppy airway rather than the "worst case scenario". In addition, I think that Professor Sillence's visit had something to do with her being discharged just three days later. 

And as for Maddy's cervical spine issues? After she was discharged, we were told that she never had the instability. But despite this, the same team of doctors gave us the same trouble when Maddy was being assessed for her cleft surgery at 17 months old. Just a week later, however, our orthopedic doctors assured us once again that Maddy's spine was perfectly stable and safe.

On one hand, I am thankful for NICU in that Maddy was in the safest place she could be IF the "worst case scenario" ever happened. On the other hand, however, I have a lot of dissatisfaction in particular with the orthopedic team at this hospital. Also I think the hospital policies here in Hong Kong are harmful to families with children in hospital, particularly long term. This time around, however, there is much that I would ask to be done differently. I feel as though I'm a lot more educated now, and I'm also a lot braver. But more about that in a later post...

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