Airway Defects Day - a Dutch story
Like a lot of Dutch babies, Bommel was born at home. The delivery went so fast that, even if we would have wanted to, there wasn’t any time to go to the hospital. If I had known then, what I know now, I would have done it differently – if I could have. But that’s just it: I couldn’t have. Because an airway defect still doesn’t show on a ultrasound. And there is no prenatal screening that could have given us a hint of what was coming…
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Symptom 1
It wasn’t obvious straightaway that Bommel was struggling. She deteriorated gradually (which is also one of the symptoms). The first clue that something was wrong was Bommel losing weight. A couple of days passed before we figured out that she wasn’t drinking enough milk, due to the fact that she didn’t know how to drink properly. Another few days had passed when we discovered that Bommel also had thrush (oral candidiasis). I thought we had found what was causing her to lose weight, and I know how relieved I felt. These were fixable problems, or so I thought.
It wasn’t obvious straightaway that Bommel was struggling. She deteriorated gradually (which is also one of the symptoms). The first clue that something was wrong was Bommel losing weight. A couple of days passed before we figured out that she wasn’t drinking enough milk, due to the fact that she didn’t know how to drink properly. Another few days had passed when we discovered that Bommel also had thrush (oral candidiasis). I thought we had found what was causing her to lose weight, and I know how relieved I felt. These were fixable problems, or so I thought.
Since Bommel wasn’t doing well, I started googling.
One of the first things I wrote down was: ‘tracheomalacia? Maybe she has a
ENT-related problem.’. But I wasn’t really alarmed just yet. After all, we
thought we had found the reason Bommel kept losing weight!
Moreover, our GP and
the nurse of our district’s infant centre were checking in regularly.
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Bommel used to put her head in the back of her neck when we held her. I didn’t know then that this was also a sign and that it made breathing easier for her. But the moment that Bommel turned blue while drinking remains etched forever in my memory. She was 2½ weeks old. That same afternoon she was admitted to our local hospital. Looking back, somewhere during those last days at home Bommel had lost her nice rosy cheeks. Her colour was off. During her hospital stay the retractions of her neck and chest became more visible. It was painful to watch her having to work so hard for one breath of air. She used to sleep a lot then, because she was so tired of all the hard work. That to me, was what pure survival looked like.
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Stridor (very noisy breathing) was not an indicator for us. It wasn’t
audible when Bommel was born. In fact she was so quiet that I remember one
time, somewhere during the first 2½ weeks, when I went upstairs to check on
her. I thought she was asleep. The baby monitor was completely silent. But, when
I arrived at her crib, Bommel was crying. I remember thinking that this was odd.
Her crying sounded hoarse and weak at the same time. A few days later she was
admitted to hospital and the stridor got louder as time passed.
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The first weeks of her life, Bommel’s condition deteriorated rapidly. She was hooked up to a cardiac / oxygen monitor, and the alarm constantly went off. There is one evening I will never forget. Bommel was having the worst apnea. Every time she stopped breathing felt like it lasted forever. Several paediatric nurses rushed to Bommel’s bed on the Neonatal Intensive Care Unit (NICU). Bommel was gasping for air, her entire tiny body was desperately searching for oxygen. It was the most terrifying and terrible sight I’ve ever seen. And as I stood by her, I kept thinking: “This can’t be happening. I can’t lose her. I just gave birth to her.” I felt like I would cease to exist if we lost her. It was the most intense, horrific feeling of powerlessness I’ve ever felt. Not being able to help her find a way to catch her breath. Luckily Bommel came around eventually, and with all kinds of tubes attached to her, I was able to hold her, never wanting to let her go.
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Not long after this episode, Bommel needed
supplemental oxygen and was transferred to a children’s hospital in a
University Medical Centre. She was assigned a room right beside the nurse’s
station because of the severity of her condition and was scheduled for surgery
the following day. By that time, Bommel was only 5 weeks old. When she went
into surgery I was an emotional wreck. My little baby girl… The doctor
performed a so called keyhole surgery to find out what was going on and if
something could be done. We really did not know what to expect. Very unnerving.
We were ‘lucky’, it turned out Bommel did have Laryngotracheomalacia, but it
wasn’t so severe that she needed a tracheostomy tube. Her larynx wasn’t fully developed and therefore it couldn’t move
properly. So, the doctor cut two little pieces out on either side of the larynx,
to provide for better movement and easier breathing (laryngoplasty).
The floppiness of the trachea would get better as Bommel grew older.
After
surgery
After surgery, Bommel’s apnea improved and as time
passed she did outgrow most of her respiratory problems. Because of her
periodic breathing she still suffers from short spells of respiratory failure.
However, this is not caused by obstruction any longer. Also she still has some
‘noisy breathing’, but I don’t even hear it anymore. Occasionally someone says
something about it and then I’m reminded of it. All in all I think we got
through this whole ‘malacia-ordeal’ pretty well. And I am very, very proud of
my little warrior!
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More awareness
is needed
However, it has caused some of the most frightening moments of my life. I am not holding anyone responsible at all, but I do live in a country where a lot of children are born at home, and nobody in our postpartum homecare team recognized any of the symptoms of Bommel’s respiratory problems. We, as parents, also did not know what signs to look for. I can only imagine how difficult it must have been at home for Bommel during those first 2½ weeks. She must have been struggling so hard. She didn’t get enough important nutrients and her immune system took a severe blow. That’s why complicating factors occurred, such as the flu and several viruses. So, on top of her respiratory problems, Bommel was also having to battle these complications.
The NICU nurses were all very surprised that we had lasted so long at home without the proper care. And that is the one thing that really gets to me: if only we had known sooner, then we could have gotten Bommel the help she needed quicker.
However, it has caused some of the most frightening moments of my life. I am not holding anyone responsible at all, but I do live in a country where a lot of children are born at home, and nobody in our postpartum homecare team recognized any of the symptoms of Bommel’s respiratory problems. We, as parents, also did not know what signs to look for. I can only imagine how difficult it must have been at home for Bommel during those first 2½ weeks. She must have been struggling so hard. She didn’t get enough important nutrients and her immune system took a severe blow. That’s why complicating factors occurred, such as the flu and several viruses. So, on top of her respiratory problems, Bommel was also having to battle these complications.
The NICU nurses were all very surprised that we had lasted so long at home without the proper care. And that is the one thing that really gets to me: if only we had known sooner, then we could have gotten Bommel the help she needed quicker.
So this is the reason why I fully endorse 'Airway Defects Day’. Awareness about
airway defects must be raised. Knowledge about the symptoms and information on
what to do need to be shared. And that’s why I am telling our story today!
Please
help raise awareness by sharing our story.
#airwaydefectsday
#airwaydefectsday
More information?
Have a look at Coping With Laryngomalacia. This nonprofit organization provides support, strength and education for families coping with laryngomalacia, tracheomalacia and bronchomalacia.
Have a look at Coping With Laryngomalacia. This nonprofit organization provides support, strength and education for families coping with laryngomalacia, tracheomalacia and bronchomalacia.
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