My daughter has Laryngomalacia and I wanted to bring some awareness to the condition. Me and my partner were both very unfamiliar as we haven’t experienced this in our families. There was also no indication of her having this in the scans.
It has taken me almost three months to come to terms with this and even then I haven’t fully accepted it. I feel scared for her at times and all I want to do is shout from the rooftops in anger because she has it. I haven’t really openly or publicly spoken about it, until now. I have tried to make my peace with it by sharing it with family and friends that are close to me, but I haven’t quite got the right words to express how it makes me feel knowing that my three month old daughter has moments where she struggles to breathe. She will grow out of it, but it can take up to two years. I find it frustrating because we don’t know when it will strengthen; it’s a waiting game. However, if her larynx doesn’t strengthen on its own she may need it operated on. As I sit here and try to write down how it makes me feel I know there is sadness, anger and frustration. I feel that its important to acknowledge all feelings because ignoring the unsavoury feelings leads to invalidation.
Laryngomalacia is a congenital condition where the laryngeal structure is floppy, which causes the vocal cords to fall in towards the airway causing an obstruction. In our case it wasn’t hereditary and from the vocal cords doing this it creates stridor (noisy breathing which in our case has been mistaken for whooping cough by medical staff). The noise itself can vary from baby to baby and can also sound similar to a trumpet noise. Alongside this, babies with Laryngomalacia are more likely to get develop reflux (GERD) which can cause further discomfort and in some cases they would need to be medicated.
I suppose a major positive in this situation was that we were still in hospital when she was diagnosed with Laryngomalacia. During our hospital stay, we stayed in three different wards as we both had contracted an infection and were put on antibiotics. I had sepsis and my baby had GBS. (That’s a story for another post, comment below if you interested in reading about my birth story).
Since our baby was born my husband had been taking baby to neonatal every day at 12pm and 12am for antibiotics. It when she was five days old during his 12am trip that a nurse mentioned to him that ‘it sounds like she has a chest infection’ or ‘that her airways could be blocked’ and how we should have it checked by a paediatrician. Before this incident we had noticed she made a noise whilst sleeping which I described as being a low moan but we thought it was normal. The midwives had been monitoring her every four hours and hadn’t mentioned that this was abnormal either.
We spent the next day waiting for a visit from the paediatrician. He didn’t arrive until a midwife panicked at the distress our baby was in. It was around 11pm as I was walking to the toilet that I noticed that her breathing and sounds were unusual. I was trying to be calm even though inside, I was afraid. I didn’t know what was going on with her. It seemed as though she was struggling to breathe due to the loudness of her stridor (at the time I didn’t know it was this). Her stridor was incredibly loud. Crying seemed to make it worse. My husband ran out of the room, and got a midwife who came in looking very concerned. She checked over our baby and decided to get an oxygen machine to check her oxygen levels. We stood helplessly, hearts racing as she put the strap on her foot. She told us to ignore the numbers, but how could we? I was alarmed. My body was in fight and flight mode, I was trying to hold back my tears. I couldn’t let myself collapse because I had to stay strong and get through this. It felt so surreal, my mind went to upsetting stories I’ve heard and seen. Our midwife was very young and you could see the sheer panic in her eyes, even whilst she was trying to reassure us.
She called for a paediatrician, who arrived promptly. He checked her over and told us that she had a mild form Laryngomalacia. He was very professional, calm and reassuring. As he was talking, I couldn’t help but feel annoyed at her having Laryngomalacia. I was already angry and upset that she had contracted GBS streptococcus. I was angry, that she had to have a lumbar puncture – meningitis check via injection in her spine. I was sad, that my tiny little baby was only a few days old and had to go through this. I just wanted to take her home. He informed both my hubby and I that we would need to monitor her for blue lips, apnea and retractions and would need to call an ambulance. My mind clung onto the possibility of having to worry about this for potentially the next two years. The thought of having to be on alert was daunting. I was exhausted at the thought of it, as all I wanted was for her to be okay and not worry about her. His diagnosis gave me some comfort in knowing what it was; my next thought process was to find out how we could manage it. She had already endured so much and she had only been on earth for five days. I was angry, upset and confused as to why she had a floppy larynx. The doctor was from East Surrey hospital and was incredibly sensitive as he was informing us of this condition and answered all our questions. I struggle with knowing that I can’t do anything to help her, her body has to work extra hard whilst she feeds and breathes.
In order to make sure she has the best care we were advised to keep her sitting upright during her feed, give her smaller feeds more frequently and keep her up for 20 minutes after every feed. Surprisingly, before the Dr had informed us of these adjustments, we had already been doing this.
Her Laryngomalacia also impacted my feeding plans. Whilst I was pregnant I was adamant that I would give breastfeeding a try. She was both breast and bottle fed for around 6 weeks, until I decided that formula was best for my baby. I myself noticed that she was struggling with breastfeeding, which normally requires babies to work extra hard. However because of Laryngomalacia I had to sit her up, it just wasn’t practical. My milk supply was already reduced from giving birth where I had lost 750ml blood from birth. Ultimately my main concern was for her well being and doing what’s best for her. So making feeding as easiest and simple for her became our main priority. It also meant that my hubby could be more involved with feeds allowing me time to recover from my vaginal delivery.
Flash forward to three months, and her stridor is quite prominent. It’s a whole new world immersed in COVID-19, face masks and politics. I am also really concerned about the implications COVID-19 could have on her as it can impact breathing and my baby already has a floppy larynx which interferes with her breathing. My baby has had trouble with silent reflux, which we discovered when she was a month old. The hospital had told us that alongside Laryngomalacia babies tend to get reflux. She was prescribed with Gaviscon, which we gave with every feed. She spent many nights unsettled and screaming in pain. Gaviscon made a slight improvement. However, she ended up dropping a feed and was still in pain at least twice a day for around 30 minutes. Nothing would soothe her. I ended up spending the entire time, holding her, rocking her and soothing her. The doctors had mentioned that if this isn’t effective they would prescribe her something stronger. I hoped that we could avoid this as the medication would be much stronger and there could be other side effects.
I continued to research and we decided to try anti-reflux milk. Before changing her milk we sought advice and support from the health visitor and the GP – who both agreed that this would be a sensible choice. Thankfully, since we have changed her milk, she has no more reflux. We have noticed an increase in appetite and are thankful that she didn’t need further intervention. In order to make sure she is receiving the best care and support she will be visiting ENT in the upcoming weeks.
I wanted to write about this and raise some awareness as I had not heard of this before. A lot of research online is not specific enough for babies with Laryngomalacia. We are just thankful that she is hitting all her milestones and developing well. We will overcome this blip together as a family.