Leah (6) lives with half a heart

Mom Tonje thanked no to abortion.

Six years old Leah is a proper skier girl; she laughs and teats and is full of energy. But the little mood spreader got a harder start to life than most.

– She has enriched our lives in a wonderful way, says mom Tonje Stokkeland to Norsk Ukeblad.

Two of Ingunn Kildahl Johansen’s three children were also born with heart failure. Here Ingunn tells of the dramatic first-time birth when nothing was as expected.

Ultrasound reveals heart failure

Ton van Bergen is only 18 when she discovers she is pregnant. Together with her boyfriend, old-fashioned Erik Rolland, she is on the regular ultrasound check in week 17.

Although pregnancy comes as a surprise to the young couple, they are looking forward to becoming parents.

Full of expectations, they are included on the screen while the midwife takes control. The midwife shows and points the screen. When she reaches her heart, she stops. “The child is ill. I can not quite see, “she excuses.

She is holding on to what the young mother feels like eternity.

Then the midwife gets a senior doctor. Superior gets a professor.

At this point, Tonje understands something is wrong with the baby’s heart. She gets panic and breaks down.

Very serious

A difficult diagnosis that she has never heard of before will be Tonje’s everyday life.

The baby in the stomach has HVHS, hypoplastic-left-heart syndrome, considered the most serious heart disease.

Leah (6) lives with half a heart

DELIVER IN NOW: – Life with Leah has been an enrichment. We take one day at a time and appreciate all the moments, Tonje says. Photo: Pål Bentdal

In short, HVHS means that the blood does not come into the left part of the heart, which means that that part is unable to develop.

Leah (6) lives with half a heart

“Should we try to operate, or shall we let him die?”

In other words, the baby in the stomach has only half a heart.

– I thought, “I just have to get home, I can not handle that”. There was too much thought to process and too much to take over. We were only in regular control to know that everything was good with the little one in the stomach, remembers Tonje, who grew up to grow today.

The 25-year-old tells with a steady and strong voice, while she does not hide the fact that it was a huge strain to get that heavy message seven years ago.

The young parents are told that the child must pass through three operations to survive, the first being the most complicated.

Offered abortion

– We received an offer for abortion, but for us it was not appropriate to cancel the pregnancy. At the same time, I was bothered with thinking it was selfish to give birth to such a serious sick child who might not want a good life, says Tonje.

Serious heart disease

Hypoplastic-Left-Heart Syndrome (HPVH) is a term for patients with dense (or almost completely tight) aortic and / or mitral valve. The dense flaps stop the blood flow in the left hemisphere. Such an error is untreated not compatible with life for a long time. The left hemisphere is so central that such patients usually do not survive the first week without surgery.

The first trials of surgical treatment started 10-15 years ago, both in Norway and elsewhere. Such a surgical reconstruction is a half-time emergency solution. A patient operated this way, hardly has normal living prospects, but can live quite well quite a long time. Over time, you may need to consider heart transplantation.

(Source: Heart Rate Child Association)

Six weeks before the semester, Tonje and Erik from Bergen go to Rikshospitalet to give birth. The foremost expertise in the country of severe heart disease is found here, and the baby in the stomach will need for this particular. Two weeks before the term, Little Leah Angelica is born. She is sent straight to the intensive care unit.

– She was the most beautiful and perfect we had ever seen, says Tonje. Leah is put in a respirator and her parents watch over her day and night.

– We wanted to spend as much time with her as possible. We would be with her all the time, and get to know her, “said Tonje.

Lively Sarah from Arendal was only four weeks old when she got a cardiac arrest and she was actually dead for almost 20 minutes.

Breaking back

Immediately after birth, the first and most complicated operation must be carried out, a so-called cardiac catheterisation.

Doctors first release a bomb for the young parent couple: If Leah has a small vein, the surgeons will not be able to complete the operation.

And if the operation is not successful, the young parents must bring their little beautiful daughter home and let her fall asleep.

Once again, the young mother breaks down.

– It came as a big shock. There was no one who mentioned this to us earlier, Tonje says seriously.

Baptized at the hospital

The parents are recommended to nurse the daughter. The baptism is carried out at the hospital.

– It was important for us to know that we wanted a tomb to go if Leah would not work, says Tonje.

Becoming a mother at a young age can be difficult for most, but the stresses Tonje has been through has made her grown and reflected.

Leah (6) lives with half a heart

LOOK: Today, Leah is a gentle and avid school girl. Photo: Pål Bentdal

She tells calmly and engaged while Leah runs around the living-room like six-year-olds most. On the day of surgery, Tonje goes so slowly she only passes through the white hospital corridors.

Leah (6) lives with half a heart

Niklas (6) lives with half brain

The only thing I managed to think was whether I would see my daughter alive again, says Tonje.

– Now let’s get her

Tonje hugges her daughter in her arms. “You must almost let us take her now,” says the surgery nurse.

Finally, the carers must tear Leah out of the arms of the young mountain mother.

When the phone rings after the operation, Tonje hears the voice of the doctor that the operation has been successful. Euphoric she runs to the intensive department.

– I was not prepared for the vision that met me. Leah was connected to lots of wires. She was not sewn again and she had a lot of fluid and blood. “Was this the right decision?” I thought. It was strong to see my little baby like that, so small and helpless, “says Tonje.

Following surgery, months follow in hospitals.

– It was a difficult time, but also a lot of pleasure. We cost us with our baby and it was lovely when we were taking her for a few hours on leave from the hospital, “says Tonje..

Could not cry

– But there was a lot to take care of. The biggest challenge was that the baby should not cry, and you can only imagine how difficult it is to have a baby that is not allowed to cry! says Tonje and smiles.

Leah (6) lives with half a heart

Sarah (5) was dead for 20 minutes

Because of Leah’s poor immune system, she could not have contact with other children, and Tonje has little contact with her three little sisters at this time. In addition, Leah gets epileptic seizures.

– I was really scared. But I was relieved that the seizures were due to the unrestrained brain of Leah.

Epilepsy is not really a disease, but a symptom of many different conditions that all lead to a transient disorder of the brain.

– Will I die?

Other operation is performed when Leah is half a year. Only when she is five years is Leah big enough for the third and last cardiac surgery. Doctors give Leah 50 percent chance of survival. “Will I die, mom?” Leah asks.

She understands that it’s serious when Mom is so sad when she’s going to hospital. “Leah, you have a heart that is very special. It’s not like the hearts of everyone else. But it is as much filled with love, “Tonje told his daughter.

– Leah was in a period very busy with death. We tried to answer as honestly as we could on all her questions. In many ways, Leah is an adult lady in a small body. She is so reflected and untrue. She is most concerned that everyone around her will be doing well, says Tonje and hugs warmly and lovingly around the little miracle girl say.

Leah (6) lives with half a heart

ACTIVE MESSAGE: Today, it’s hard to believe that Leah lives only with half a heart. Photo: Pål Bentdal


Leah (6) lives with half a heart

– We felt we participated in an episode of House

After surgery, Tonje is called by the doctors. “Everything is good with the heart. But something has happened to the arm, “says the doctor.

Leah’s armor flange had jumped out of the years, and 300 milliliters of blood had gone straight in her arm. Since that time, Leah has been in anesthesia 11 times to sew and fix the wound and she has several operations on her arm waiting.

The cardiac surgery is also not permanent. Probably Leah must carry a heart transplant when she comes in the 40’s.

An enrichment

– Look at me, look at me, laugh at the wild six-year-old while she’s kidding over the sofa.

That Leah has spent much of his life clinging to it is hard to see traces of today. The only noticeable signs are a long vertical scar in the middle of the chest.

– In many ways, all operations on the arm have been more important for Leah than heart surgery. For a little girl who wants to dress up, it’s not fun to go with a huge bandage on her arm. The itching is uncomfortable and must be around the clock, says Tonje.

Leah (6) lives with half a heart

– Our daughter is an angel

Today, Leah is a gentle and eager schoolgirl. Ton and Leah’s father do not live together anymore, but have a good relationship with the daughter. They have chosen to live in the present and do not focus too much on Leah’s disease. There has been a conscious choice. They have both new cohabitants, both of whom stand up for Leah and attend a sick visit.

– Leah has many who love her, and that’s good, Tonje says.

But Leah is the strongest of us. Despite long hospital stays, she is always a warm and thoughtful happy girl. She has enriched our lives in a wonderful way.

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