Told by his mother Johanna

After a number of antenatal growth scans Michael was deemed small, so an induction was booked at 39 weeks. Everything went well with my induction and before the evening came I was holding my second son. In the evening, on the maternity ward, I mentioned to a midwife that Michael was having difficulty sucking his bottle. She reassured me that even bottle fed babies sometimes needed to learn how to latch, no medical staff assisted or watched his feeds and we were discharged within 24 hours.

Christmas day – five day review, difficulty latching on

Our five-day review fell on Christmas day, we headed to a different local hospital from the birth hospital for our appointment; again I pointed out that Michael wasn’t latching well, the midwife advised me to try a different teat, I questioned this as we had originally used disposable bottles and teats in the maternity unit and had use completely different teats since. Everything seemed to be fine physically, so we wished the health team a Happy Christmas and headed back to celebrate.

At home Michael’s feeding wasn’t improving, but due to his age I wasn’t too concerned about the amount of fluids he was consuming.

A visit to A&E and an overnight stay

It was in the late afternoon of 29th December when I first felt something was definitely wrong, Michael had slept through his hourly feed. I initially thought “maybe if he sleeps a little longer he’ll feed a bit more and we’ll build a better routine”. So I left him in his Moses basket and continued to play with my toddler and his new Christmas presents.

When I checked the time I couldn’t believe 40 minutes had passed, I then realised Michael hadn’t moved and was showing no signs of
waking up. I crawled closer but nothing appeared visually wrong so I got up and started to prepare a bottle while I continued to watch him. I picked him up and he didn’t respond to being lifted, I started to run the teat of his bottle along his lips and again he didn’t respond,
not even his usual lip curl. He was clearly breathing but I couldn’t get him to wake. His father called Emergency Services on 999 and while on the call I started to take Michael’s sleepsuit off, that’s when I noticed his skin was mottled more than usual and he was using his diaphragm and ribcage muscles to breathe, I lent in closely and could then hear an very faint grunt.

When we explained what was happening, emergency services immediately sent an ambulance. Michael’s breathing wasn’t fast or slow and
when checked out by medics his breathing was within the normal range. By the time we arrived at the hospital Michael had woken up a little, although he was still very sleepy. We were taken to Michael’s birth hospital and he was fitted with an NG tube after we discussed his feeding issues. He was monitored over night and we were discharged the next day with his discharge notes noting feeding, breathing and mottled skin was likely to have been  caused by a viral illness, I was shocked that no clear diagnosis had been made and that he was discharged with just a likely conclusion.

Trying out different teats and formulas

Michael continued to find feeding extremely difficult and tiring, and over the next few weeks I took on the midwife’s advice and started to work our way through different teats and formulas hoping something would help, we used every brand available on shop shelves and
had started to make our way through online only products.

I eventually contacted our GP as  I had become concerned that Michael wasn’t increasing in his fluid intake and arranged a face to face appointment. During that appointment the GP noticed that his suckle was very faint and thought his feeding issues were
possibly down to a tongue tie, so we awaited a referral.

Shortly after our GP appointment we had our six-week visit from our health visitor, we had a long chat and I explained my concerns and the steps I had taken to try and help him, the health visitor weighed Michael and his weight had dropped from the 25th centile at birth to
the 0.4th centile, we then both became extremely concerned and she asked me to take him to A & E. While I packed a bag as I knew we would be admitted, our health visitor asked if she could feed Michael herself and she agreed that he didn’t seem to be latching correctly.

Weight concerns and a dramatic turn

A & E reweighed Michael because health visitor’s scales are mobile units and they thought it was possible the scales were inaccurate but on the hospital scales he weighed less than on the health visitor’s. Things then took a dramatic turn and everyone was shocked that he weighed less, they tried feeding Michael different milks with different teats and nothing changed, he couldn’t latch correctly.

Tongue tie – a possibility

Multiple doctors checked him and I mentioned to one of them that our GP thought he could possibly be tongue tied. Immediately after that several doctors checked for a cleft palate and one of them called the maternity unit to request a midwife to come and clip his tongue,
this is when we all discovered that after a baby has reached 4 weeks old midwives can not clip a tongue tie. The doctor then contacted the hospitals MAXFAX (maxillofacial surgery) team and requested someone assessed him.

Unfortunately the MAXFAX surgeon that assessed Michael wasn’t aware that there are two types of tongue ties, so she made a referral to her senior. More physical assessments took place on ward with a number of doctors and one noted he had a slightly high palette. Michael’s breathing wasn’t assessed even though they also had noted that his breaths per minute increased by 20+ BPM (beats per minute) while feeding and that he would keep stopping after 4-5 suckles to breathe.

Positive response to sideways feeding

That night the evening nurse asked if she could feed him and I agreed, she popped a pillow across her legs and laid Michael sideways with his back against her stomach, I was surprised by this as I’d never seen or heard of this technique before, but I was so happy that he was able to intake more fluids. I questioned a number of times why this was easier for him and I received no medical explanation, just that some
babies find it easier.

We stayed in hospital until they were satisfied that Michael was able to continue feeding better on his side and he was discharged with twice weekly weight reviews for two weeks with referrals to SALT (speech and learning therapy) and the senior MAXFAX surgeon. Michael’s weight reviews after discharge showed he was following the 0.4th centile but this wasn’t considered an improvement as he was supposed to go above that, with the aim to reach the 25th centile again.

Doctor ignores concerns

The 6-8 week GP review came around, Michael received a physical assessment again and I stressed his feeding issues which were now well documented in his medical records and within his red book, as well as explaining he was currently having twice weekly weight reviews with no improvement. You can imagine just how shocked my reaction was when I later read the GP’s notes in Michael’s red book, his feeding was marked completely satisfactory, along with no parental concerns.

Michael’s last weight review on his twice weekly two-week plan became the moment that changed everything. His weight had stayed the same and caused a slight drop on his centile again, his skin was still mottled and my Health Visitor requested I call my GP, as she was concerned his weight and his appearance weren’t improving. We were both astonished that after explaining concerns about his mottled appearance, and a slight drop in centiles that my GP didn’t think it was necessary to see Michael face to face and told me to wait until the next weight review, in case he improved next time.

A new hospital and breathing concerns

Our health visitor contacted her senior to explain what had been happening with Michael and explained that she felt enough wasn’t being done medically, between them they organised an on ward assessment at a different local hospital to where he was born. We arrived at the hospital in the late afternoon, Michael received another physical assessment and this time the doctor assessing him noticed his breathing, she asked “is it normal for him to breathe like that” and I replied “yes, he’d been admitted because of his breathing previously“.

Again Michael wasn’t breathing fast, his breaths per minute were within the normal range, but he did have retractions. Michael was immediately sent for a chest X-ray and afterwards we sat in our assessment room waiting for what felt like an eternity. Eventually three consultants appeared they all physically examined him without uttering a word. After 10 or 15 minutes, one of the consultants stepped back to make me aware they were putting a plan in place and that one of the other doctors would explain that plan in detail shortly.

Heart failure

The consultant Michael had first been assessed by approached me, she pulled two chairs together and asked me to take a seat, I could tell that I was about to hear a parents worst nightmare. “Michael has heart failure” is a sentence I’ll never forget.

Michael was admitted to hospital and fitted with an NG tube for a 3rd time, with a plan to feed him a 3rd of his recommended amount, our doctor worked out what a 3rd was and came back to notify me that they would feed him his usual manual amount, as a 3rd of the recommended amount was more and they weren’t sure if he was able to drain the excess fluids.

Royal Brompton and Great Ormond Street Hospital (GOSH) were both notified of Michael’s diagnosis.

Early the next morning a doctor who was off duty came in to perform an echocardiogram on Michael, he called both Royal Brompton and Great Ormond Street Hospital again to pass on the extra information he had gained. GOSH was the first to have a bed available and a specialist transfer team was sent to collect us.

Arrival at GOSH

We arrived at GOSH around 9.00 pm, countless scans, x-rays and tests were performed and a full diagnosis was reached at 2am, Michael had severely restricted coarctation of the aorta (COA), severe heart failure, a completely failed stomach (unable to absorb fluids), also, other organs like his kidneys were failing. GOSH estimated a life expectancy of around a week with no intervention as his body was in the process of shutting down, surgery was scheduled for the following morning.

Morning came, I had given consent during the night and was made aware of the risk but it was during the conversation with the anaesthetist that it all really hit me, moving from our local hospital to GOSH everything had been so full on I hadn’t had time to think, once she left it was just me and Michael and my thoughts.

Successful surgery

The time came for us to make our way to theatre room 12, I held him extra tight, gave him a kiss and placed him in the arms of the anaesthetist I had spoken to earlier. Surgery took two hours longer than usual but went well. Seeing him for the first time I was amazed at how healthy he looked, his skin was a completely different colour, his legs were pink and warm.

Cardiac arrest

Unfortunately the joy was short lived as Michael suffered a cardiac arrest that evening, the arrest lasted for two and a half minutes before he was resuscitated, I didn’t think I could be told anything worse than what I’d heard over those couple of days but I was told the cardiac
arrest could have caused brain damage. The team decided to keep Michael sedated after the usual time frame for COA surgery so his body had extra time to recover.

After that Michael’s recovery went fairly smoothly, his stomach failure took two weeks to improve but once an improvement was established and he had successfully been fed 3oz via NG (nasogastric) tube and it was fully absorbed Michael was discharged to the high dependency unit and it was time to finally feed him his first bottle since his x-ray, 3 and half weeks earlier.

To watch Michael feed with no struggling after everything he had been through is a moment I will cherish forever.

Michael is now 20 months old and has recovered brilliantly, although his aorta is still slightly narrow and surgery later in life is a possibility, his heart is functioning almost normally, his blood pressure sits at the top end of acceptable levels and he has hypertrophic cardiomyopathy, which means he will continue to see the cardiologist twice a year. We are dealing with a few development delays like speech which has been highlighted as a possible side effect of the late diagnosis and his cardiac arrest.

An investigation into Michael’s care showed that the facts that:

• his breathing increased by 20+ breaths per minute during feeds
• he fell asleep while feeding,
• took small amounts over an extended period of time
• suckled 4 – 5 times before pausing and breathing

should have alerted clinicians that there was a deeper issue.

Our feeding routine was extremely difficult, Michael would sleep for 45 minutes – 1 hour, he would then feed anything from half an oz – 2oz over another 45 minutes – 1 hour, he would usually fall asleep while feeding and wake up within half an hour to continue his feed, this was around the clock, and there were many, many nights I didn’t sleep at all.

The investigation also stated that side feeding alleviates breathlessness from heart failure, no blood pressure (BP) was ever taken (Michael was found to have high BP in arms and low BP in legs).

The out come for his investigation and lessons learned

His case will be used as teaching aid to improve knowledge amongst all medical staff
around the recognition of congenital cardiac disorders in infants and children

• X-rays will be performed for infants with a history of feeding issues or large centile
  drops
• Blood pressure to be taken in A&E for all infants and children
• Blood pressure to be taken on ward for all infants and children
• All infants that have dropped more than two centiles on their growth chart must have
  four limb blood pressure checks.
• An increase in respiratory rate should have been flagged as a concern, a rise in
  respiratory rate while feeding, of more than 10 BPM, should lead the nurse managing
  patients care escalating to the medical team.
• The diagnostic scope must be widened if the initial diagnosis is not confirmed as
  expected.
• Failure to thrive in infancy can be caused by heart failure and, therefore, this
  diagnosis must be considered and investigated in babies with poor weight gain.
• A baby with COA can retain femoral pulses for several weeks
• COA is a difficult diagnosis to anticipate and make but should be recalled as a cause
  of incipient heart failure, especially in the first and second month.