My Daughter‘s Story with ALCAPA

Written by Polli Holli

Hi I am Polli from germany, the mother of a daughter who is now 10 months old. My pregnancy was largely uncomplicated. We had frequent and regular prenatal check-ups with some of the best doctors in the city, and everything always looked perfectly normal.

The birth was long, and ultimately a C-section was performed because she was not positioned correctly in the birth canal and her heart rate began to weaken over time.

Afterwards, everything seemed perfect. But when she was around 5–6 weeks old, her weight stopped increasing, and we began having regular weight checks. During her sixth week, I sent my midwife a video of my daughter’s breathing pattern because she was showing significant retractions. I am a pediatric nurse myself, so I knew what this looked like, but I was still unsure and asked for advice. She told me that this could be normal at times and that I did not need to worry.

From that point on, our daughter began having repeated episodes of intense crying and was drinking very poorly at the breast. Doctors suspected a cow’s milk protein allergy or another type of intolerance.

In February, after our daughter had lost 200 grams in just two weeks, our pediatrician decided to refer us to the hospital.

A week earlier, I had called an ambulance to our home because she had cried herself into such a state that she almost became unconscious. She was barely responding to stimuli. By the time the paramedics arrived, however, she was “normal” again — perhaps a little paler than usual, but otherwise seemingly fine in the paramedic’s assessment.

When we arrived at the hospital, we had to wait a long time in the emergency department. Understandably, we were not considered an acute emergency at that point.

Over the next two days, a great deal of diagnostic testing was carried out, except for a chest X-ray and an echocardiogram.
By the third day, our daughter’s condition had become acute and extremely serious. I kept telling the doctors, “I don’t want her to become an emergency.”

She was vomiting after every feed, which by then was being given through a feeding tube because she was too weak to drink. Only the physiotherapist and the speech and feeding therapist seemed to notice just how severely unwell she was.

The doctors eventually decided to perform a gastroscopy and bronchoscopy because they still had no explanation for her condition.
We waited until midday. She slept almost continuously and looked grey.

After the long, seemingly routine examination, the doctor asked us to come into a separate room. At that moment, I knew something was wrong.

He told us clearly and firmly: “Your daughter has a severe and rare congenital heart defect.”

ALCAPA — Anomalous Left Coronary Artery from the Pulmonary Artery.

I felt as if I were in a movie.

Our child was supposed to be healthy.

He told us that she was in a critical condition and needed to be transferred immediately to a specialized cardiac center for surgery.
The anesthesia from the bronchoscopy had caused her condition to deteriorate even further. I was terrified that she would not survive the journey.

Thankfully, the cardiac center was “only” about 30 minutes away.

We followed her there as quickly as possible, but I cannot remember anything about the drive.

When we arrived, the doctors gave us very little hope as they explained the surgery and anesthesia to us because she was so unstable. They decided to stabilize her overnight and begin surgery first thing the next morning.

That evening, we said goodbye to our daughter — not knowing whether we would ever see her alive again.

The next morning, we spent hours in the hospital cafeteria, waiting.

After 10 hours of agonizing uncertainty, we finally received the news that she was alive.

When I saw her for the first time, surrounded by cables and machines, connected to ECMO and with her chest still open, I wasn’t shocked.

Instead, that was the moment I knew she was going to make it.

From that moment on, I never doubted her for a single second.

I was almost relieved. I was grateful for every machine and every piece of equipment that was keeping her alive.

After speaking with the surgeon, another timer began to run.

If her heart could not recover while supported by ECMO, there would be no hope.

The time on ECMO is limited to a maximum of around 2–3 weeks because the risk of complications increases significantly the longer a patient remains on it.

Every day, we stayed by her side around the clock, holding on to nothing but positive thoughts and hope.

On the sixth day, the ECMO had to be removed because she was increasingly developing complications from it.

Then we received the phone call:

Her heart was beating on its own again.

From that day on, everything continued to improve.

It took her a long time to fully wake up from sedation, which worried the doctors. They were concerned that her brain might have been deprived of oxygen at some point, especially because she had needed to be resuscitated for 2.5 minutes during anesthesia.

Thankfully, she made a full recovery.

She was treated with Captopril and Spironolactone for four months. Afterwards, our cardiologist was able to discontinue all of her medication because her heart function was comparable to that of a healthy heart.

She has only a small mitral valve insufficiency, which, as long as it remains this mild, should not cause her any problems.

We are incredibly grateful to once again be able to live a normal life and to hold a healthy child in our arms.

We owe her life to so many people.

So far, she has no neurological impairments. Because she was not allowed to lie on her stomach for a long time after surgery, she is slightly behind in her motor development. But she is catching up quickly and is determined to catch up with all the other children her age.

We could not be more grateful for this peace.

For the first time in a long time, we are simply grateful to be able to look at our daughter, hold her in our arms, and know that she is here.