CHD Awareness Week: Our heart warrior - Woche der Angeborenen Herzfehler: Unser Herzkind

But Jesus looked at them and said to them, “With men this is impossible, 
but with God all things are possible.” 
Matt 19:26

CHD Awareness Week: Our heart warrior

Being a Heart Mom has changed me tremendously. Being a Heart Papa - in our family he goes by Papa :) - has changed my husband tremendously. When we were forced to live with HLHS, we learned to appreciate life! We mourn with the families that have lost their child through one form of CHD or another. Through the internet and social media we hear of children with CHD that have lost the battle. It is a sad but little known fact that CHD is the No.1 cause of childhood death.

Also, we learned to appreciate the details, every one of life's many intricacies. We learned to concentrate on the important things. Most of all, though, we learned to trust the Lord one. day. at. a. time. God is good - all the time.

We love our little heart warrior. If we said this out loud in front of Olevander, he would probably ask: What? Who?? I don't think he considers himself a heart warrior. :)

He knows, though, that his heart is different. He knows that he has to work harder. He will huff and puff up the stairs and he will never outrun his peers. He will always have to self-limit his physical activities. But he is a bright and curious 5 year old. We are grateful that he was given to us.

His last open-heart surgery was some 4 1/2 years ago. It has been such a beautiful time, with no interruptions of hospital stays, heart caths, or treatments. Just normal, everyday life. We go to the cardiologist twice a year for check-ups. Ole takes 2 medications daily: Lisinopril and Baby-Aspirin. And really, that is it!

Olevander is a blessing to our family. He is our miracle boy. We are thankful for the superior care of CHOA that we are blessed to have within reach. We recognize the expertise and immense knowledge of the team there, with Dr. Kirshbom and Dr. Kanter having been Ole's surgeons. We do know, though, that all the credit goes to God, the Great Physician and Healer.

Jesus aber sah sie an und sprach zu ihnen: "Bei den Menschen ist es unmöglich; 

aber bei Gott sind alle Dinge möglich." 

Matt. 19, 26

Woche der Angeborenen Herzfehler: Unser Herzkind

Mutter eines Herzkindes zu sein, hat mich grundlegend veraendert. Vater eines Herzkindes zu sein, hat meinen Mann grundlegend veraendert. Als wir mit HLHS konfrontiert wurden, lernten wir das Leben zu schaetzen. Wir trauern mit den Familien, die ihr Kind durch angeborene Herzfehler verloren haben. Durch das Internet und die sozialen Medien hoeren wir immer mal wieder von Herzkindern, die den Kampf verloren haben. Es ist eine traurige und wenig-beachtete Tatsache, dass angeborene Herzfehler der haeufigste Grund fuer Tod im Kindesalter ist.

Ausserdem haben wir gelernt, die Einzelheiten des Lebens zu schaetzen, seine ganze Komplexitaet. Wir haben gelernt, auf die wichtigen Dinge Wert zu legen. Am allermeisten aber haben wir gelernt, Tag fuer Tag dem Herren zu vertrauen. Gott ist guetig, zu jeder Zeit.

Wir lieben unseren kleinen Herzkrieger. Wenn wir das vor Olevander sagen wuerden, wuerde er sicher fragen: Was? Wen?? Ganz sicher haelt er sich selbst nicht fuer einen Herzkrieger. :)

Er weiss allerdings, dass sein Herz anders ist. Er weiss, dass er mehr tun muss, als alle anderen. Treppen muss er hochschnaufen. Beim Rennen wird er seine Altersgenossen nie ueberholen. Bei sportlicher Betaetigung wird er seine Kraft immer einteilen muessen. Aber er ist ein heller Kopf und ein wissensdurstiger 5jaehriger. Wir sind dankbar, dass er uns geschenkt wurde.

Seine letzte OP war vor 4 1/2 Jahren. Was fuer eine herrliche Zeit! Kein Krankenhausaufenthalt, Herzkatheter oder sonstige Behandlung hat sie unterbrochen. Einfach ganz normales, alltaegliches Leben. Wir gehen 2x im Jahr zum Kardiologen. Ole nimmt taeglich 2 Medikamente: Lisinopril und Baby Aspirin. Und das war es auch schon!

Olevander ist ein Segen fuer unsere Familie. Er ist unser Wunderkind. Wir sind dankbar fuer die ausgezeichnete Betreuung durch das Kinderkrankenhaus CHO Atlanta und sind froh, es in der Naehe zu haben. Wir wuerdigen die Kompetenz und das immense Wissen der Belegschaft dort, mit Dr. Kirshbom und Dr. Kanter als Olevanders bisherigen Chirurgen. Wir wissen aber auch, dass wir Gott allein, dem grossen Arzt und Heiler, fuer alles zu danken haben.

CHD Awareness Week: HLHS Papa

My husband, Richard Kaiser, in his own words:
My wife Kirstin Westphal has been publishing beautiful posts about our journey with our HLHS heart baby, Olevander.

Olevander is a very special boy. He makes me a very proud Papa. We were devastated when we found out about his condition, HLHS, around his 20th week of gestation. Kirstin and I devoured every piece of information that we could find on our baby's condition. We were quickly up to speed on the condition and treatments, etc., all of which were 'patches' and not cures. There were no proven cures. We looked into a promising hyper-oxygenation therapy in Germany, but because Ole's left ventricle had zero blood flow we were not a good fit for this treatment. We looked into an experimental treatment that had to be performed before the 29th week of gestation that promised to be a possibility to cure some HLHS/HRHS conditions, but once again, because of zero blood flow in Ole's left ventricle, we were not a good fit for this procedure which involved operating on the baby while inside the mother AND with a survival rate of about 5% on the first human trials - not good to say the least. So, powerless, and totally in the hands of God and the doctors that he blessed us with here at CHOA Egleston we proceeded day by day and hour by hour through the next 20 weeks of gestation and the 3 open heart surgeries (2 planned and 1 unplanned to correct a complication) and 2 caths,one of which was touch and go for a while as the doctors worked to preserve Ole's life.

As an engineer, I understood everything and was totally powerless to do anything to help save my son's life. So we prayed, a lot, and lived moment to moment over those first 21 months of Ole's life totally powerless and having no options, but to trust in the Great Physician.

 

There is no cure for HLHS. Only treatments to prolong and preserve the patients life allowing them to survive. Eventually the patients will experience congestive heart failure and have no alternative, except a heart transplant which carries a whole list of issues also and due to rejection is good for maybe around 15 years.

The first patients were treated with the Norwood, Glenn, and Fontan procedures starting in the early 80's. This is the course we're on now, but so much has been learned and improved on since these first babies were saved by these procedures.

God allowed Olevander to be born at a good time. Right at the rise of the field of Regenerative Medicine. I truly believe that by the time Olevander reaches college age, God willing, that Regenerative Medicine has a very good chance of developing a cure for many conditions, including many major heart conditions, by actually synthesizing a heart from the patient's own tissues and maturing it in the laboratory until it is ready to transplant into the patient. This would be an excellent cure as there would be no rejection and the patient would have a new heart made of his own flesh and blood. This technology is amazing, but just since the turn of the 3rd millennium, over the past 15 years, this field has gone from growing replacement ears on the backs of mice, and growing skin grafts in the lab to synthesizing bladders, kidney's, and blood vessels and heart valves to be used in repairing hearts. This field is growing exponentially. In the past year researchers have actually synthesized a human heart that could sustain its own heartbeat! There is still much work to be done, but progress is being made. I'm praying and am so hopeful that in the next 10 or 15 years that this field will be able to cure my son.

God bless.

CHD Awareness Week: Heart Mom - Woche der Angeborenen Herzfehler: Mutter eines Herzkindes

Therefore I tell you, do not be anxious about your life. Which of you by being anxious can add a single hour to his span of life? But seek first the kingdom of God and his righteousness, and all these things will be added to you. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. 
Matt. 25, 27, 33-34

CHD Awareness Week: Heart Mom
When we first learnt of Olevander's heart defect it took my innocence. From that point on, I couldn't take anything for granted anymore. I knew my baby was doing fine in utero: There are 2 openings in the heart that allowed his blood to flow. After birth, however, Hypoplastic Left Heart Syndrome is a fatal condition. As soon as these openings would close, our baby - if left untreated - would die within hours or days. In light of today's experience with treatment, who would choose to do that?
When I considered all of what was to come I was dreading the day of his birth. Toward the end of my pregnancy, one cardiologist congratulated us: You almost made it!
Instead, I felt it was rather the opposite: Get ready, set, the storm is about to begin. Our battle plan was to immediately rush baby to Children's Healthcare of Atlanta, give him medicine to keep these vital openings open, and send him into his first surgery, the risky Norwood.
The health of my baby was out of my control. The outcome of this complicated surgery was out of my control. There was nothing else I could do for my baby than to pray. And praying we did. So many people have prayed for Baby O! It was incredible! What a unifying time!
In this crisis we learnt to trust God in everything. Trust Him completely in all the details. Stay calm, breathe, and - despite the circumstances - experience peace. Frankly, peace has been my attitude since.
Why worry about his next surgery, the Fontan, when it is not here yet? Why worry about Olevander's life expectancy when he gets to enjoy a happy childhood? Why waste my emotions on worries about his FUTURE if his PRESENT is so uneventfully normal?
Live in the HERE and NOW. Breathe and enjoy. Trust God in everything else.

Darum sage ich euch: Sorgt euch nicht um euer Leben. Wer aber von euch kann durch sein Sorgen zu seiner Lebenslänge eine einzige Elle hinzusetzen? Trachtet vielmehr zuerst nach dem Reich Gottes und nach seiner Gerechtigkeit, so wird euch dies alles hinzugefügt werden! Darum sollt ihr euch nicht sorgen um den morgigen Tag; denn der morgige Tag wird für das Seine sorgen. Jedem Tag genügt seine eigene Plage. 

Matt. 25, 27, 33-3

Woche der Angeborenen Herzfehler: Mutter eines Herzkindes
Als wir von Olevanders Herzfehler erfuhren, nahm mir das meine Unschuld. Von nun an konnte ich nichts mehr als selbstverstaendlich betrachten. Ich wusste, dass es meinem Baby in der Gebaermutter gut geht: Fuer die normale Blutzirkulation gibt es 2 Oeffnungen im Herzen. Nach der Geburt jedoch ist Hypoplastisches Linksherzsyndrom toedlich. Sobald sich diese beiden Oeffnungen schliessen, wuerde unser Kind - unbehandelt - innerhalb von wenigen Stunden oder Tagen sterben. Wer wuerde das bei all den heutigen Behandlungsemethoden nur tun?
Als ich mir ueberlegte, was alles auf uns, auf unser Baby, zukommen wuerde, machte mir der Tag der Geburt Angst. Gegen Ende meiner Schwangerschaft gratulierte mir einer unser Kardiologen: Fast geschafft!
Stattdessen verspuerte ich eher das Gegenteil: Auf die Plaetze, Fertig, der Sturm geht gleich los. Unser Schlachtplan war, unser Kind sofort in das Kinderkrankenhaus Children's Healthcare of Atlanta zu transportieren, ihm die Medizin zu geben, die die lebenswichtigen Oeffnungen offen haelt und ihn seiner ersten Operation zu unterziehen, der riskanten Norwood.
Das Wohlbefinden meines Sohnes war ausserhalb meiner Kontrolle. Das Resultat dieser komlizierten OP war ausserhalb meiner Kontrolle. Ich konnte nichts weiter fuer ihn tun, als fuer ihn zu beten. Und gebetet haben wir. So viele Menschen haben fuer Baby O gebetet! Es war beeindruckend! Was fuer eine vereinigende Erfahrung!
In dieser Krise haben wir gelernt, Gott in allem zu trauen. In jedem Detail ihm zu vertrauen. Ruhig bleiben, atmen, und trotz aller Umstaende Frieden zu erfahren. Und ehrlich gesagt, Frieden ist mein Leben seither.
Warum sich Sorgen ueber seine naechste OP, die Fontan, machen, wenn sie noch nicht dran ist? Warum sich ueber Olevanders Lebenserwartung Sorgen machen, wenn er JETZT eine frohe Kindheit erleben darf? Warum sich Sorgen um seine ZUNKUNFT machen, wenn seine GEGENWART so erfreulich-unaufregend und normal ist? Im HIER und JETZT leben. Atmen und geniessen. Fuer alles andere Gott vertrauen.